Your Dr is lovely. Did you ever think that your Dr thinks of you with her bad cases, because you remind her that you can be more than your disease. You are tangible accessable proof she can show patients and families, of the possablilities of life with RP. You are not a cautionary tale but more of a guiding light.
What a beautifully positive way of looking at it! I was kinda looking for a comment like this, and I'm thankful you delivered. And I'm certain that the doctor will at least now, after seeing Molly and seeing the amazing success she's made of herself, she will be able to remember Molly as a prime example of how the condition doesn't have to define a person or their outlook at live!
I was watching the video where you did James Charles’s makeup and there were so many comments from ignorant people saying you were faking it because you looked at the camera etc. They were so self righteous and it made me sick to see people being so cruel based on absolutely no evidence. After watching so many of your videos talking about your blindness and crying with you, I almost feel like I’ve been through the journey myself and I feel personally insulted when I see comments like that. Hopefully this video will shut those people up once and for all. I’m going through my own sight loss journey and finding your channel has helped me more than words can say. Thank you for everything you do, sending so much love your way xxx
I feel almost the same way when I see that. After I go cool off, I try to direct them to some of her other videos where she might explain one part of her optic problems better, and especially the one where she answered some of the really dumb questions. The light on top of the camera being the easiest answer, obviously, but there are so many other things people bitch about. Sometimes I ask them why they are even here. Just to ruin someone else's day? Really?
Love learning more about your disease. Education is so so important. So yes next appointment please share with us. Lots of love to you and your amazing family xx
You're NOT the symbol of "not good RP." You're the symbol of beauty, love, kindness, intrepidity, heart, good ambition, hard work, and life goals. I agree with you, Canada needs more RP specialists, your doctor seems especially kind and helpful.
Jade Thank you! ❤️ There are definitely challenging days but it’s really just an adventure of adaptation. I’m an ultra runner, and now I’m starting to learn how to use signed guides for an upcoming 100 miler!
I love how the 7 and 9 year old boys are already such great advocates! You can tell, he's explained his illness so many times - but he explains it in an easy to underatand way for any kid or adult!!
Molly Burke thank you so much molly! i'm glad too! nice to see you also have some fond memories at the hospital. lastly, thanks so much for commenting. you're the best! sending you lots of love ☺️🐝💕💜
Your doctor was saying you are who she thinks of when she sees that variant diagnosis. Yes, it means she imagines you as “worst case scenario” as you said, but it also means she imagines you as the beautiful potential that can be seen in the end. Like you need the reminder, but NEVER forget you’re a light on the other side of their diagnosis, showing them they can and will be alright.
"It's so much easier. Life is so much easier when I can just be okay with it." I am in tears. I've been losing my sight for nearly 5 years due to a disorder called CRION. I'm legally blind now. For a long while I was trying to deny losing my sight. I didn't want to use a cane, I didn't want to seem different and vulnerable. Molly is such an inspiration. I understand. It's so much easier to just accept it. Now I proudly use my cane and use sunglasses/eye patches to help me live as comfortably as I can. There is no shame in having a disability, and I hope others with disabilities can one day see that. Thank you, Molly.
Molly this video makes me so incredibly happy in such a strange way. You don’t know me and we’ll probably never get a chance to talk but our experiences have been so parallel. I’m 40 so I’m an old guy comparatively but I have been legally blind since birth. I’ve six corneal transplants and have almost no vision in my right eye, left is considerably better (20/400 on a good day) but I get this video (and most of your videos about sight loss) in such a powerful and profound way. The journey of self acceptance is so critical and so hard and our relationship with our doctors is so important to the whole process. Anyway, I don’t really know what exactly I am trying to say, other than thank you, this all really resonated for me very deeply. Shoutout to Mass Eye and Ear where I spent basically the first three years of my life on the Pediatric floor!
Adam B. Zimmerman awww...what a beautiful & amazing comment and person you are!! I can't imagine how difficult your journey must have been. Much love to you and prayers for strength & courage to keep going & stay positive. You seem like a wonderful person & I'm happy just reading that Molly's videos have impacted you so positively!! I feel the same way about her and her videos!! ❣️ ❣️ 💞 💗 💗 💖
@@TheRealMythril it's also on facebook, but if you dont do that either then you can just take my word for it. Its purple and it's very cute! She dyed it at the beginning of January.
Also wanted to add, as someone who also has rare medical conditions, my doctors call me a zebra or unicorn lol and I think it's a nice way of looking at it.
If the person who replied and then deleted their comment sees this I'm super curious as to how you knew I have ehlers danlos syndrome 😋they deleted the comment before I could respond but yes I have vascular type ehlers danlos syndrome as well as the "classic"(hypermobility) type and superior mesenteric artery syndrome along with a few others. But how did you knoww
Even though your doctor think of you as "the symbol of not good", I bet that you are also a great source of light for her, seeing how well you are doing now and how happy you are much of the time. It makes me happy to watch you, and I believe it must be a thousand times more so for her.
I am a 16 year childhood cancer survivor & I just cried cathartically while watching this. It's so hard for me, sometimes, to think back to spending long hours in the Children's Hospital, in addition to all the lasting effects I deal with as an adult. But I love hearing others' stories that are similar to mine. Thank you for sharing your journey, Molly. You're such a beautiful soul. xoxo
I mean...those kids in sickkids hospital are absolutely freaking adorable!!! That little boy is so incredibly articulate & intelligent! & soo cute! I'm shook!! Lol! So cute I swear! ❣️❣️🥰💓💓💗😂😚❤️
The fact that you’re ‘worst case scenario’ and you’re doing so well by voicing your story and are able to be as open and active and that you’re not letting your diagnosis define who you are is amazing! You should be really proud! 🥰
Molly my dear, 25 is not old, lol! You are going to be 25 years young! My youngest son is now 25, so you can imagine how I feel, lmao! Keep up the awesome work and I love you for who you are! Take care, Kim
I just wanted to say how much I appreciate you. With out you video about how you use electronics, I wouldn't be able to use my phone, or do any of my school work. Thank you so much
Thank you for sharing this part of you! I agree, the chronic illness community is great here on TH-cam, I have a couple chronic illnesses myself (Dysautonomia and Ehlers Danlos syndrome) and I started my channel to raise awareness for those conditions and show the ups and downs. That's why I like your channel so much, it's a great mixture of that. ♥️
@@anniewilliams2876 be prepared to fight for what you need and be your own advocate because its not well understood, everything else will be blamed on the eds but don't accept that as an answer! I was diagnosed really young and it took until I was 19 for them to realise my stomach issues weren't just my digestive system being overstretched and that I've actually had coeliac disease from being around 6 and left with permanent bowel damage from their stubbornness
@@anniewilliams2876 Find a good geneticist! And realize that whatever they say isn't the end of the world, but knowing what is going on is very very helpful and key to things that might come up in the future.
Don't think of yourself as "not good." You are now a beacon of light for people with your same condition. Your Dr. and others can now point to you and say "Look what a beautiful life this young lady has now. Look how many lives she touches and makes brighter every single day."
Hi Molly, this will probably get completely lost in you sea of comments, but I wanted to let you know that my friend recently was diagnosed with RP and she went through a really hard time, and still is going through that.. butI showed her one of your older videos and she looks up to you so much, because she realized that she still is living and going blind isn't death. Thank you sooo much!! 💜💜💜💜
@@MollyBurkeOfficial ... hello..m from India..my baby is 5+ month old his eyeballs were not stable when he was 2 month old bt after doing some exercises with light he started little bit eye contact.... how could I check visibility as he is too small...bt still he follow d lights...try to grab things which we show him...plz tell dear so worried....
Molly I have EDS and managed to over the last two weeks. Dislocate my hip and ankle. As well as fracturing my elbow and breaking my hand. Having you and other disability vloggers on here is so amazing! When I'm at my lowest to see people who are overcoming is so important!! Thank you
I was flown to Sick Kids when I was born. I spent the majority of my life on and off at that hospital. And aged out sadly not the way it should have been done but what can ya do. I went to that hospital before it was renovated and pretty. Ward 8C was where I spent my time. Something I did that I think you would get a kick out of is getting a record of you clinic notes. It’s so fascinating!
Don’t forget Molly it’s never us that’s the worse case. It’s the disease, it’s the pain it caused you, the adjustment you had to go through at such a young age. Those are the things she remembers when she thinks of you. Because you Molly as a person have overcome more than a person should in a fast and short time. But you’ve grown so much in the years I’ve been watching your channel. And those are just the parts of you you show online. In your personal life these so much more I know that you’ve done and overcome. So when you take about hearing what your doctor says when she see someone else with a disease like yours remember that all those struggles as hard as they were you came out on the other side to the person you are today. You are hope to those kids and people who come into that office. With love from a small town reservation gal.
I really needed to give you a hug at the end of the video, you seemed almost tearful. I know what you mean about your doctor validating your experience. Illness and disability is really isolating and you are the only one who really knows exactly what your going through. A specialist doctor who has been through your journey with you is probably the closest person to knowing your experience. To have them voice what has happened to you and what it means can make you realise in a weird way that it is real. It’s not just an internal experience but something that exists and someone understands. It’s a weird feeling. It’s kind of like when you’re going through a rough time and feel low and there are people around you who know what is happening and experience it’s effect on you. If one of those people say ‘I know how hard things have been for you recently’ and actually list those things (lost a job/loved one/didn’t get a promotion/had car troubles/fell out with close friend/argument with partner etc) it makes you see those things in a different context, not just the pain and stress but the whole picture. It helps you step out of your own experience in a way and validates why you’ve been feeling so rubbish, because you see it from the outside. Hope that makes sense! Xx
As a 55 year old legally blind woman with Stargardt’s disease, I find your content fresh, fun and full of importance. It’s so wonderful to see a beautiful spitfire spreading love, joy and support for all! Thanks for your sharing and support Molly 💕💐
Yes, I’m another middle-aged legally blind woman (OK, I’m 53 so I’m starting to go slightly north of middle-aged, but I feel much younger). I’ve been legally blind since birth
I spent loads of time in a children's hospital when I was younger 😂 I remember I had my most painful operation when I was 12 or 13 where they had to repair a hole in my eardrum and remove all the tissue that prevented me from hearing in my right ear. I was in pain and couldn't eat for a a week but my ear is mostly okay now! Sometimes I remember how lucky I am that my impairment wasn't as severe as it could have been and that it could be fixed, but sometimes I still feel embarrassed or self conscious when I can't hear people speaking or have to leave class because of the pain, your videos are so inspiring and always remind me to accept myself
Fellow Sick Kids Patient here! I was a cardiology patient and they saved my life. I just recently graduated from sick kids and it was awesome to walk down memory lane but to also see a different part of sick kids. This video was amazing, it's absolutely amazing that you have this huge platform and you took the time to share your experience with the world at a hospital that does so much for so many kids. Thank you :)
Your doctor is awesome....you can tell she’s so connected with her patients....AMAZING!!🙌🏼💖she has walked your journey with you and I find that so heartwarming....I feel like a lot of doctors just disconnect from patients and that’s all they are, just patients...you can tell your doctor has become like part of the family....my son was born with a club foot so we spent a lot of our time at Boston Childrens Hospital ....we were lucky enough to have a great doctor and that helps a lot ....I know for us it made a big difference in his progress and recovery 🙌🏼
Even though you say you are the "worst case scenario", you have given a light to a community that would have remained hidden without you. You are the best case scenario for your community and I am so so so thankful for what you have taught me over these past few years. Keep up the amazing work! Your killer bees love you
I was a patient at Sick Kids until I was 18. I was fortunate enough that I didn't have to go there very often, but when I did have to go there for appointments, I was treated with the best care. The last time I was a patient there was when I had my shunt replaced 11 years ago after having it for 16 and a half years. I miss the youth health care system and being able to go to awesome places like Sick Kids. The adult system is just not the same. Molly, thank you for what you do on your TH-cam channel. I think the content you post is much needed to help others understand a part of what living with a disability is like.
Hey Molly, I just want to let you know you’re such an inspiration to me, I’m not blind but I have juvenile myoclonic epilepsy and sense I was diagnosed when I was 13 (almost 3 years ago) I feel like it’s been holding me back from a lot of things but sense I started watching you I have learned that even though I can’t do things I could before I was diagnosed the same that it shouldn’t hold me back, so thank you very very much.
Molly you said that You are the best example of the worst case scenario... and ok, you got blind at a very young age, that's not cool, but what I actually think is that you are the best example of strength, braveness and confident. You went through a lot when you were just a little girl, but you got over it perfectly!! Look at you now, you're such a strong woman, gorgeous, with a very bright smile, always trying to give the best of you for everyone. Do you know that you are an inspiration for too many people?(including me) you are AMAZING, I discovered your channel when you made a video with sister James and now I'm obssesed with you!(in a good and healthy way, promise). You are the perfect example of personal growth, you taught me to be grateful with every little thing I have, you taught me that I can do anything I want, that my only limit is my mind. Please never ever give up!! You are the support of many of us, you are the extra hope anyone needs. Thank you for sharing your life with us, it means a lot. Greetings from Venezuela!!!! (by the way I am not an english speaker, please don't judge my redaction be kind I wrote it with love) LOVE YOU MOLLY
My husband has rp as well and his bday is on the fourth of Feb. His condition is usher syndrome which is retinitis pigmentosa and hearing loss. He lost his license last year has the progression in the condition took his peripheral vision.
Your doctor is incredible and so caring. I basically lived in the hospital growing up, thank you for showing where you have been and where you are now. You are truly an angel!
OMG you went to SickKids Hospital, wow my dad used to work there do you know a Juan Pablo Appendino if you don't, want maybe he went by J. P. Please like this so molly can see it
It's nice in a way that you're a "worst case scenario", because you overcame it. It makes me feel like if I ever go blind I'll be able to still live and have a great life like you. Thanks for being you Molly!
As someone that has no sight issues, this really puts things in perspective and helps me understand more of what you and other people with this disease are going through. It's crazy to me how something like that can change your whole world and so many take for granted. I feel incredibly blessed!
Okay... I just came from Colleen’s video. I have Nystagmus and have never met anyone else with it other than my grandma. When I heard you had it too (and also others in the comments) my heart skipped a beat. I feel so happy to now be connected with people that understand. I seriously could cry. Thank you so much for these videos!
Is it sad I'm so happy you get to at least see some colors (blue purple green) and some bright lights/shadows instead of total darkness. I wish I could give you some of my sight because you deserve it.
So crazy seeing you as SickKids. My sweet boy was born in September and had heart surgery at SickKids and we spent 7 weeks inpatient. We’re there allllllllll the time still! So thankful for the amazing drs!
I'm not blind but I am friends with some amazing people who happen to have various forms of physical disabilities. They and I appreciate the positive representation that you bring out into the world and we are all very inspired and just want to say thank you.
I'd love that you take us with you to your appointment ! And I'd be interested too if you could talk about all the treatments and testing you had to go through when you were younger...
Your doctor is so kind. I love her outlook. I was that person that refused to use a cane. I tried so often to pretend to be ok. I finally got tired of it and started using tools I needed. Less physical injury and less frustration .... Much more content and happiness. Especially since I told my i.r.l. and facebook friends as well as creating a few videos on TH-cam. It is such a relief. Livin your truth whatever that is is life improving. 💖
Omg I love your shoes!! They are amazing!! 💜 Molly I'm currently living with a disability, I have a trapped nerve in my groin , It causes pain in my left leg and I walk with a crutch sometimes two, it's been the hardest 2 years of my life and watching you has helped me so much 💛💛
I am so incredibly thankful I found your videos months ago when I started losing my vision. I ended up having a rare brain illness called IIH and it can cause complete vision loss if left untreated (and even then it can still happen because it’s not highly researched and there is no cure) Through you being so open and honest and accepting of your illness you gave me the courage to face mine. And you give me the strength to accept whatever is coming if treatment doesn’t work. Thank you Molly, truly.
Your dr. Is absolutely lovely! That makes a difference in life! We have an amazing family Dr who has been there for everything, delivering my baby, going through my type 1 diabetes, my husband's brain tumor, and everything in between. A good dr. Can make dealing with life's curve balls a lot easier!
I have RP, I am 36. I have 15degrees of visual field left. My birthday is also Feb 8th, my favorite color is also purple!! I am so so so happy that I have found you! You have helped me realize there is life... beautiful life after blindness!! You give me strength and courage. It’s so hard when you are the only one you know that has RP and you have no one to lean on that TRULY understands. You are a bright spot for me. Thank You!!
When you said that your doctor talking about your diagnosis felt validating it actually totally resonated with me. You've helped me discover something about myself today, which was: I have always felt more positive when my doctors talk about the severity of my diagnosis, and now I know it's because them saying that completely validates my experience- wow...I love moments of clarity
Literally was writing a comment about how glad that I found you through your shane collaboration. I watch all of your videos! Also, we have the same Birthday!!!!!
Sick Kids Hospital is absolutely amazing! I was born with Pierre Robin Syndrome with a cleft palate, and later a failure to thrive, and I had to be airlifted from my birth hospital to the Sick Kids Hospital. Of course I don't remember my time there but my parents tell me we were well taken care of and cared for. I would later go to CHEO in Ottawa, Ontario that was somewhat similar and they would take care of all my checkups until I was an adult. The Doctors and Nurses in that hospital were always so kind to me. So glad you're doing this video and I would LOVE to see how your checkups would go!
Its awesome that you have that type of relationship with your doctor and everyone there at the hospital. I would love to see you at your next appointment, and see what the doctor sees! To learn more in detail not just what you may read on TH-cam. I need to go to my eye doctor soon bc my sight is getting worse. I know I cannot see at night I do have a lazy eye and have an astigmatism. I think when I wear my glasses it's still getting harder for me to see. And its so much worse without my glasses of course. I want to thank you Molly for sharing your life experiences with of of us! I truly love you sweetie! You have such a beautiful heart!
Very true about those special specialists. My daughter was born with a cleft lip and palate and when we moved back to canada, she had seen an orthodontist who flew here from the states monthly. When the children's hospital was about to move to the super hospitals, her ortho had to make the decision of not continuing to fly here - it was getting too expensive for the hospital and for him. I like your term of graduating out (our doctors called it aging-out - makes this mama feel old, haha)
Going through any type of disease like this can't be easy, but to know you have a rarer case must be so much harder to go through. Yet, here you are making videos for everyone going through the same thing even if it's not an extreme case, or not the same disease, or just informing and teaching people to be more aware and understanding is so amazing. I look forward to your videos because I know I will learn something that I can maybe one day use to teach someone else or help someone going through this themselves. Thank you Molly. You are brave, strong and amazing.
Your disease might be the worst case scenario, but you are the best case scenario! You've already done so much with your life and helped so many people. You're achieving so much and you have so much purpose. Love you! -Abby
Molly! You are such an inspiration to me! Ever since I started watching your videos just a few months ago my perspective has changed so much about my own experiences with RP. The disease runs on my mom’s side (my mom, brother, cousin, aunt, grandma and great aunt have/had it as well). Growing up watching my mom, whose condition is much more severe than anyone in our family, dealing with everyday struggles of tunnel vision and night blindness has been a bit tough. I am 26 years old and only in recent years have I noticed my peripherals reallllllly start to get bad (it’s always been pretty meh and I’ve always had night blindness but recently it’s been noticeably worse). I feel really lucky that I was introduced to your channel and that you are a voice for this rare disease. Im also so blessed that I have a wonderful fiancé and friends who encourage me to be completely open and honest about my RP and are always willing to help me when I’m struggling in the dark or need a ride, etc. My mom had such a different way of going about it, like she was always trying to hide it and was ashamed. She hasn’t been working since she was in her early 20s and she lives a pretty isolated life. I aspire to have a positive outlook in life as you do, to travel the world and do all the things that you do despite your disease. You are an inspiration to me. Thank you, thank you, thank you!!
From what I think I know about you, you probably don't want to hear this but I was so choked up at the end of this video. I just want to give you a big hug. Love you, sweetheart.
Would you want to see a video following me through an eye appointment at Sick Kids Hospital next time I'm in?!
Hi :3
You should definitely do that! That sounds amazing
Yessssss
Molly Burke luv u molly
Molly Burke yes sounds like a bomb video
Molly your lipstick matches your hair perfectly what the heck
Truuee
Lol I also match my hair to my lipstick (it's like dark magenta)
Can we take a minute to admire those sparkly pink shoes?! Rock it girl!
Yes I love them too
I think they are adidas but glittery. I want lol
Your doctor is amazing and we can see that she truly cares for you :)
Dr Heon looks like Celine Dion👸🏼
Yas
@@KiKiQuiQuiKiKi im not the only one that noticed.
she sounds French
Your Dr is lovely. Did you ever think that your Dr thinks of you with her bad cases, because you remind her that you can be more than your disease. You are tangible accessable proof she can show patients and families, of the possablilities of life with RP. You are not a cautionary tale but more of a guiding light.
Love this ❤️
Well said!!!
That is the best truth I have ever heard In my life!
What a beautifully positive way of looking at it! I was kinda looking for a comment like this, and I'm thankful you delivered. And I'm certain that the doctor will at least now, after seeing Molly and seeing the amazing success she's made of herself, she will be able to remember Molly as a prime example of how the condition doesn't have to define a person or their outlook at live!
I love how a young boy isn't afraid to say his favorite TH-camr is a gay make-up artist. that warmed my heart.
It shows that the new generation is turning out ok 😁
Molly I went to the same sick kids you went too. What a small world! I was also a patient since I was 6 months old. They are so amazing there. 💜
No way!! Sick Kids kids unite! hehe Yes, it's SUCH a special place.
I was watching the video where you did James Charles’s makeup and there were so many comments from ignorant people saying you were faking it because you looked at the camera etc. They were so self righteous and it made me sick to see people being so cruel based on absolutely no evidence. After watching so many of your videos talking about your blindness and crying with you, I almost feel like I’ve been through the journey myself and I feel personally insulted when I see comments like that. Hopefully this video will shut those people up once and for all.
I’m going through my own sight loss journey and finding your channel has helped me more than words can say. Thank you for everything you do, sending so much love your way xxx
You are so sweet.
Stay strong sister!
Love your comment and you seem like a very sweet person.Im glad you found Mollys channel, big hugs to you
I feel almost the same way when I see that. After I go cool off, I try to direct them to some of her other videos where she might explain one part of her optic problems better, and especially the one where she answered some of the really dumb questions. The light on top of the camera being the easiest answer, obviously, but there are so many other things people bitch about. Sometimes I ask them why they are even here. Just to ruin someone else's day? Really?
And yes, please film your eye exam!! I'm very interested in seeing how different it is from a sighted person's exam.
B eth So much different than a sighted exam. And each Blind persons exam looks pretty different too! :)
I'm very interested too !
Love learning more about your disease. Education is so so important. So yes next appointment please share with us. Lots of love to you and your amazing family xx
You're NOT the symbol of "not good RP." You're the symbol of beauty, love, kindness, intrepidity, heart, good ambition, hard work, and life goals. I agree with you, Canada needs more RP specialists, your doctor seems especially kind and helpful.
Thank you, this is so sweet! My doctor is amazing, I love her!
how CUTE is that nine year old boy! he's so smart and articulate i'm amazed
As a teen with nystagmus and progressive vision loss... all the tears. Thank you so much for this video. ❤️❤️❤️
I’m similar
PrePreMed I have nystagmus, optic atrophy and RP
furyfox13 My dog is trained to guide me on runs, but she didn’t grow up as a service dog so I don’t take her out in public with me.
I'm so sorry :( Sending hugs your way
Jade Thank you! ❤️ There are definitely challenging days but it’s really just an adventure of adaptation. I’m an ultra runner, and now I’m starting to learn how to use signed guides for an upcoming 100 miler!
Awww those kids were SOOOO CUTE
Thanks for the heart Molly I love you
I love how the 7 and 9 year old boys are already such great advocates! You can tell, he's explained his illness so many times - but he explains it in an easy to underatand way for any kid or adult!!
sick kids hospital saved my life when i was little. makes me happy to see this place again and how awesome it is ☺️💜🐝
All the Killer Bees are so glad you're still here!!
Molly Burke thank you so much molly! i'm glad too! nice to see you also have some fond memories at the hospital. lastly, thanks so much for commenting. you're the best! sending you lots of love ☺️🐝💕💜
Your doctor was saying you are who she thinks of when she sees that variant diagnosis. Yes, it means she imagines you as “worst case scenario” as you said, but it also means she imagines you as the beautiful potential that can be seen in the end.
Like you need the reminder, but NEVER forget you’re a light on the other side of their diagnosis, showing them they can and will be alright.
You are so right
"It's so much easier. Life is so much easier when I can just be okay with it."
I am in tears. I've been losing my sight for nearly 5 years due to a disorder called CRION. I'm legally blind now. For a long while I was trying to deny losing my sight. I didn't want to use a cane, I didn't want to seem different and vulnerable.
Molly is such an inspiration. I understand. It's so much easier to just accept it. Now I proudly use my cane and use sunglasses/eye patches to help me live as comfortably as I can. There is no shame in having a disability, and I hope others with disabilities can one day see that. Thank you, Molly.
Yes film at your apt
Molly this video makes me so incredibly happy in such a strange way. You don’t know me and we’ll probably never get a chance to talk but our experiences have been so parallel. I’m 40 so I’m an old guy comparatively but I have been legally blind since birth. I’ve six corneal transplants and have almost no vision in my right eye, left is considerably better (20/400 on a good day) but I get this video (and most of your videos about sight loss) in such a powerful and profound way. The journey of self acceptance is so critical and so hard and our relationship with our doctors is so important to the whole process. Anyway, I don’t really know what exactly I am trying to say, other than thank you, this all really resonated for me very deeply. Shoutout to Mass Eye and Ear where I spent basically the first three years of my life on the Pediatric floor!
Adam B. Zimmerman awww...what a beautiful & amazing comment and person you are!! I can't imagine how difficult your journey must have been. Much love to you and prayers for strength & courage to keep going & stay positive. You seem like a wonderful person & I'm happy just reading that Molly's videos have impacted you so positively!! I feel the same way about her and her videos!! ❣️ ❣️ 💞 💗 💗 💖
Just_AutumnYT same!!!! 🙏🏻 👍🏻 💓😊☺️😌
I received my RP diagnosis on world braille day! Another weird coincidence
Funny how the world works, isn't it?
That's so weird
RP is the condition molly has right
Molly Burke it’s crazy
furyfox13 I was diagnosed in January of 2017 but it was pretty far advanced when I found out. I was legally blind and didn’t know it lol
You need purple hair for February girl!
I know right?!
She does have purple hair right now. Go follow her instagram
Danielle Snow I don’t do Instagram.
@@TheRealMythril it's also on facebook, but if you dont do that either then you can just take my word for it. Its purple and it's very cute! She dyed it at the beginning of January.
It's so interesting to find out about your eye condition. Also HAPPY BIRTHDAY ON THE 8TH OF FEBRUARY!!
Wow your doctor is an angel.
Also wanted to add, as someone who also has rare medical conditions, my doctors call me a zebra or unicorn lol and I think it's a nice way of looking at it.
In my condition im called a zebra! 🦓
@@Bethprincess zebras unite!! 🦓
Zebra friends! 💙
If the person who replied and then deleted their comment sees this I'm super curious as to how you knew I have ehlers danlos syndrome 😋they deleted the comment before I could respond but yes I have vascular type ehlers danlos syndrome as well as the "classic"(hypermobility) type and superior mesenteric artery syndrome along with a few others. But how did you knoww
@@Juwlz when I see people say zebra, I always think of eds. It's where it's used the most regularly I think
WHO could DISLIKE Molly! She's an angel.
Even though your doctor think of you as "the symbol of not good", I bet that you are also a great source of light for her, seeing how well you are doing now and how happy you are much of the time. It makes me happy to watch you, and I believe it must be a thousand times more so for her.
I am a 16 year childhood cancer survivor & I just cried cathartically while watching this. It's so hard for me, sometimes, to think back to spending long hours in the Children's Hospital, in addition to all the lasting effects I deal with as an adult. But I love hearing others' stories that are similar to mine. Thank you for sharing your journey, Molly. You're such a beautiful soul. xoxo
Molly sitting in a room full of happy clowns while wearing all black and a leather jacket is a mood
A kiss in the forehead is the most genuinely way to show someone you really care and love them. What a beautiful relationship you two have
I mean...those kids in sickkids hospital are absolutely freaking adorable!!! That little boy is so incredibly articulate & intelligent! & soo cute! I'm shook!! Lol! So cute I swear! ❣️❣️🥰💓💓💗😂😚❤️
The fact that you’re ‘worst case scenario’ and you’re doing so well by voicing your story and are able to be as open and active and that you’re not letting your diagnosis define who you are is amazing! You should be really proud! 🥰
Molly my dear, 25 is not old, lol! You are going to be 25 years young! My youngest son is now 25, so you can imagine how I feel, lmao! Keep up the awesome work and I love you for who you are! Take care, Kim
My grandchildren are teenagers - I'll second that totally!
I love how your doctor looks at you, like a mother looks at her child, she likes you so much and your relationship must be so great and full of love.
I just wanted to say how much I appreciate you. With out you video about how you use electronics, I wouldn't be able to use my phone, or do any of my school work. Thank you so much
Oh wow, I'm SO glad it was helpful to you!
Thank you for sharing this part of you! I agree, the chronic illness community is great here on TH-cam, I have a couple chronic illnesses myself (Dysautonomia and Ehlers Danlos syndrome) and I started my channel to raise awareness for those conditions and show the ups and downs. That's why I like your channel so much, it's a great mixture of that. ♥️
Im in the process of getting diagnosed with eds... Any tips?😅
POTs? I’m diagnosed w both as well
@@anniewilliams2876 be prepared to fight for what you need and be your own advocate because its not well understood, everything else will be blamed on the eds but don't accept that as an answer! I was diagnosed really young and it took until I was 19 for them to realise my stomach issues weren't just my digestive system being overstretched and that I've actually had coeliac disease from being around 6 and left with permanent bowel damage from their stubbornness
I’m an EDS zebra as well. 🦓💪🏼
@@anniewilliams2876 Find a good geneticist! And realize that whatever they say isn't the end of the world, but knowing what is going on is very very helpful and key to things that might come up in the future.
Love you Molly
Don't think of yourself as "not good." You are now a beacon of light for people with your same condition. Your Dr. and others can now point to you and say "Look what a beautiful life this young lady has now. Look how many lives she touches and makes brighter every single day."
Hi Molly, this will probably get completely lost in you sea of comments, but I wanted to let you know that my friend recently was diagnosed with RP and she went through a really hard time, and still is going through that.. butI showed her one of your older videos and she looks up to you so much, because she realized that she still is living and going blind isn't death. Thank you sooo much!! 💜💜💜💜
Send my love to her.
@@MollyBurkeOfficial ... hello..m from India..my baby is 5+ month old his eyeballs were not stable when he was 2 month old bt after doing some exercises with light he started little bit eye contact.... how could I check visibility as he is too small...bt still he follow d lights...try to grab things which we show him...plz tell dear so worried....
When I lived in Canada I made a monthly donation to SickKids. I adore everything they stand for.
Who else loves Molly!?
Kylee Nguyen me
Gallop does! :D hehe
Molly Burke most certainly!
Me
👍
Molly I have EDS and managed to over the last two weeks. Dislocate my hip and ankle. As well as fracturing my elbow and breaking my hand. Having you and other disability vloggers on here is so amazing! When I'm at my lowest to see people who are overcoming is so important!! Thank you
I was flown to Sick Kids when I was born. I spent the majority of my life on and off at that hospital. And aged out sadly not the way it should have been done but what can ya do. I went to that hospital before it was renovated and pretty. Ward 8C was where I spent my time.
Something I did that I think you would get a kick out of is getting a record of you clinic notes. It’s so fascinating!
Don’t forget Molly it’s never us that’s the worse case. It’s the disease, it’s the pain it caused you, the adjustment you had to go through at such a young age. Those are the things she remembers when she thinks of you. Because you Molly as a person have overcome more than a person should in a fast and short time. But you’ve grown so much in the years I’ve been watching your channel. And those are just the parts of you you show online. In your personal life these so much more I know that you’ve done and overcome. So when you take about hearing what your doctor says when she see someone else with a disease like yours remember that all those struggles as hard as they were you came out on the other side to the person you are today. You are hope to those kids and people who come into that office. With love from a small town reservation gal.
I really needed to give you a hug at the end of the video, you seemed almost tearful.
I know what you mean about your doctor validating your experience. Illness and disability is really isolating and you are the only one who really knows exactly what your going through. A specialist doctor who has been through your journey with you is probably the closest person to knowing your experience. To have them voice what has happened to you and what it means can make you realise in a weird way that it is real. It’s not just an internal experience but something that exists and someone understands. It’s a weird feeling.
It’s kind of like when you’re going through a rough time and feel low and there are people around you who know what is happening and experience it’s effect on you. If one of those people say ‘I know how hard things have been for you recently’ and actually list those things (lost a job/loved one/didn’t get a promotion/had car troubles/fell out with close friend/argument with partner etc) it makes you see those things in a different context, not just the pain and stress but the whole picture. It helps you step out of your own experience in a way and validates why you’ve been feeling so rubbish, because you see it from the outside.
Hope that makes sense! Xx
As a 55 year old legally blind woman with Stargardt’s disease, I find your content fresh, fun and full of importance. It’s so wonderful to see a beautiful spitfire spreading love, joy and support for all! Thanks for your sharing and support Molly 💕💐
Kimber Fae I’m 42, just letting you know not everyone is a preteen here. 😁🙌🏽
Yes, I’m another middle-aged legally blind woman (OK, I’m 53 so I’m starting to go slightly north of middle-aged, but I feel much younger). I’ve been legally blind since birth
I spent loads of time in a children's hospital when I was younger 😂 I remember I had my most painful operation when I was 12 or 13 where they had to repair a hole in my eardrum and remove all the tissue that prevented me from hearing in my right ear. I was in pain and couldn't eat for a a week but my ear is mostly okay now! Sometimes I remember how lucky I am that my impairment wasn't as severe as it could have been and that it could be fixed, but sometimes I still feel embarrassed or self conscious when I can't hear people speaking or have to leave class because of the pain, your videos are so inspiring and always remind me to accept myself
Fellow Sick Kids Patient here! I was a cardiology patient and they saved my life. I just recently graduated from sick kids and it was awesome to walk down memory lane but to also see a different part of sick kids. This video was amazing, it's absolutely amazing that you have this huge platform and you took the time to share your experience with the world at a hospital that does so much for so many kids. Thank you :)
Even though you may be the symbol of "not good" for RP, you only bring positivity to the TH-cam community and probably everything else you do!
Your doctor is awesome....you can tell she’s so connected with her patients....AMAZING!!🙌🏼💖she has walked your journey with you and I find that so heartwarming....I feel like a lot of doctors just disconnect from patients and that’s all they are, just patients...you can tell your doctor has become like part of the family....my son was born with a club foot so we spent a lot of our time at Boston Childrens Hospital ....we were lucky enough to have a great doctor and that helps a lot ....I know for us it made a big difference in his progress and recovery 🙌🏼
Really informative video Molly. Loved it! ❤️
Even though you say you are the "worst case scenario", you have given a light to a community that would have remained hidden without you. You are the best case scenario for your community and I am so so so thankful for what you have taught me over these past few years. Keep up the amazing work! Your killer bees love you
Really loved this video Molly! I’d love to see more vids kind of like this one! 💕
I was a patient at Sick Kids until I was 18. I was fortunate enough that I didn't have to go there very often, but when I did have to go there for appointments, I was treated with the best care. The last time I was a patient there was when I had my shunt replaced 11 years ago after having it for 16 and a half years. I miss the youth health care system and being able to go to awesome places like Sick Kids. The adult system is just not the same. Molly, thank you for what you do on your TH-cam channel. I think the content you post is much needed to help others understand a part of what living with a disability is like.
Hey Molly, I just want to let you know you’re such an inspiration to me, I’m not blind but I have juvenile myoclonic epilepsy and sense I was diagnosed when I was 13 (almost 3 years ago) I feel like it’s been holding me back from a lot of things but sense I started watching you I have learned that even though I can’t do things I could before I was diagnosed the same that it shouldn’t hold me back, so thank you very very much.
Molly you said that You are the best example of the worst case scenario... and ok, you got blind at a very young age, that's not cool, but what I actually think is that you are the best example of strength, braveness and confident. You went through a lot when you were just a little girl, but you got over it perfectly!! Look at you now, you're such a strong woman, gorgeous, with a very bright smile, always trying to give the best of you for everyone. Do you know that you are an inspiration for too many people?(including me) you are AMAZING, I discovered your channel when you made a video with sister James and now I'm obssesed with you!(in a good and healthy way, promise). You are the perfect example of personal growth, you taught me to be grateful with every little thing I have, you taught me that I can do anything I want, that my only limit is my mind. Please never ever give up!! You are the support of many of us, you are the extra hope anyone needs. Thank you for sharing your life with us, it means a lot.
Greetings from Venezuela!!!!
(by the way I am not an english speaker, please don't judge my redaction be kind I wrote it with love)
LOVE YOU MOLLY
My husband has rp as well and his bday is on the fourth of Feb. His condition is usher syndrome which is retinitis pigmentosa and hearing loss. He lost his license last year has the progression in the condition took his peripheral vision.
Kitty Lover I’m hard of hearing and Blind but I don’t have Ushers. I have a lot of friends with it though.
Your doctor is incredible and so caring. I basically lived in the hospital growing up, thank you for showing where you have been and where you are now. You are truly an angel!
OMG you went to SickKids Hospital, wow my dad used to work there do you know a Juan Pablo Appendino if you don't, want maybe he went by J. P.
Please like this so molly can see it
It's nice in a way that you're a "worst case scenario", because you overcame it. It makes me feel like if I ever go blind I'll be able to still live and have a great life like you. Thanks for being you Molly!
You are a rare gem
Thank you for showing us all that it is ok be Who You are, that is ok to be You
As someone that has no sight issues, this really puts things in perspective and helps me understand more of what you and other people with this disease are going through. It's crazy to me how something like that can change your whole world and so many take for granted. I feel incredibly blessed!
The best series is back!!!!!! Love you molly your videos always brighten up my day
❤️ ❤️ ❤️ Xx
Okay... I just came from Colleen’s video. I have Nystagmus and have never met anyone else with it other than my grandma. When I heard you had it too (and also others in the comments) my heart skipped a beat. I feel so happy to now be connected with people that understand. I seriously could cry. Thank you so much for these videos!
check up video!!
Those little boys! Oh my god, such manners and so well-spoken. The TH-camrs of the future
Is it sad I'm so happy you get to at least see some colors (blue purple green) and some bright lights/shadows instead of total darkness. I wish I could give you some of my sight because you deserve it.
So crazy seeing you as SickKids. My sweet boy was born in September and had heart surgery at SickKids and we spent 7 weeks inpatient. We’re there allllllllll the time still! So thankful for the amazing drs!
*Who else loves how inspiring Molly is?!* 💓
I'm not blind but I am friends with some amazing people who happen to have various forms of physical disabilities. They and I appreciate the positive representation that you bring out into the world and we are all very inspired and just want to say thank you.
I'd love that you take us with you to your appointment ! And I'd be interested too if you could talk about all the treatments and testing you had to go through when you were younger...
Your doctor is so kind. I love her outlook. I was that person that refused to use a cane. I tried so often to pretend to be ok. I finally got tired of it and started using tools I needed. Less physical injury and less frustration .... Much more content and happiness. Especially since I told my i.r.l. and facebook friends as well as creating a few videos on TH-cam. It is such a relief. Livin your truth whatever that is is life improving. 💖
Omg I love your shoes!! They are amazing!! 💜 Molly I'm currently living with a disability, I have a trapped nerve in my groin , It causes pain in my left leg and I walk with a crutch sometimes two, it's been the hardest 2 years of my life and watching you has helped me so much 💛💛
I am so incredibly thankful I found your videos months ago when I started losing my vision. I ended up having a rare brain illness called IIH and it can cause complete vision loss if left untreated (and even then it can still happen because it’s not highly researched and there is no cure)
Through you being so open and honest and accepting of your illness you gave me the courage to face mine. And you give me the strength to accept whatever is coming if treatment doesn’t work.
Thank you Molly, truly.
Molly your so inspiring 💕💕💕 I hope one day I can meet you!😭😊
Your dr. Is absolutely lovely! That makes a difference in life!
We have an amazing family Dr who has been there for everything, delivering my baby, going through my type 1 diabetes, my husband's brain tumor, and everything in between. A good dr. Can make dealing with life's curve balls a lot easier!
Wow I love this Molly
Those two little boys were so so cute!
I have RP, I am 36. I have 15degrees of visual field left. My birthday is also Feb 8th, my favorite color is also purple!! I am so so so happy that I have found you! You have helped me realize there is life... beautiful life after blindness!! You give me strength and courage. It’s so hard when you are the only one you know that has RP and you have no one to lean on that TRULY understands. You are a bright spot for me. Thank You!!
Hi Molly I just started seeing your videos from Shane and I really like you that is for being so positive
When you said that your doctor talking about your diagnosis felt validating it actually totally resonated with me. You've helped me discover something about myself today, which was: I have always felt more positive when my doctors talk about the severity of my diagnosis, and now I know it's because them saying that completely validates my experience- wow...I love moments of clarity
#earlysquad btw love your channel keep it up😘
Your doctor is so sweet- you can tell she really cares
Literally was writing a comment about how glad that I found you through your shane collaboration. I watch all of your videos! Also, we have the same Birthday!!!!!
What's amazing about Molly is that even if she can't use them, she has the most beautiful pair of eyes😍
You are such a beautiful soul ❤️
Molly’s doctor seems like such a knowledgeable and all-around amazing doctor!
1:49 my favorite color is teal and the P.T.S.D. awareness ribbon is teal. (I have P.T.S.D. just FYI)
You've taken your worst case scenario, and made your life a fabulous and amazing place. I admire your strength and spirit.
Killer bees where are you at
hereeee! 🐝🐝🐝🐝🐝
Im in hell come and get me😈😈😈
👍🐝
🐝🐝🐝🐝🐝🐝
Buzz buzz
Sick Kids Hospital is absolutely amazing! I was born with Pierre Robin Syndrome with a cleft palate, and later a failure to thrive, and I had to be airlifted from my birth hospital to the Sick Kids Hospital. Of course I don't remember my time there but my parents tell me we were well taken care of and cared for. I would later go to CHEO in Ottawa, Ontario that was somewhat similar and they would take care of all my checkups until I was an adult. The Doctors and Nurses in that hospital were always so kind to me.
So glad you're doing this video and I would LOVE to see how your checkups would go!
Love you Molly, best TH-camr ever ❤️ ♥️
Aw, you're so sweet! Thank youuuu.
No problem ❤️
Rema Maarouf I agree 110% 💕
She is one of my absolute favorites
Its awesome that you have that type of relationship with your doctor and everyone there at the hospital. I would love to see you at your next appointment, and see what the doctor sees! To learn more in detail not just what you may read on TH-cam. I need to go to my eye doctor soon bc my sight is getting worse. I know I cannot see at night I do have a lazy eye and have an astigmatism. I think when I wear my glasses it's still getting harder for me to see. And its so much worse without my glasses of course. I want to thank you Molly for sharing your life experiences with of of us! I truly love you sweetie! You have such a beautiful heart!
You're amazing me and my cousin watch you!
Say hi to your cousin for me! :D
Very true about those special specialists. My daughter was born with a cleft lip and palate and when we moved back to canada, she had seen an orthodontist who flew here from the states monthly. When the children's hospital was about to move to the super hospitals, her ortho had to make the decision of not continuing to fly here - it was getting too expensive for the hospital and for him. I like your term of graduating out (our doctors called it aging-out - makes this mama feel old, haha)
Going through any type of disease like this can't be easy, but to know you have a rarer case must be so much harder to go through. Yet, here you are making videos for everyone going through the same thing even if it's not an extreme case, or not the same disease, or just informing and teaching people to be more aware and understanding is so amazing. I look forward to your videos because I know I will learn something that I can maybe one day use to teach someone else or help someone going through this themselves. Thank you Molly. You are brave, strong and amazing.
I love her videos so much she is so pretty!💜 she inspired me to tart my own channel this year!!
YAY, you go girl!! :D
Molly Burke aw thank you😊💜💜💜
got yourself a new subscriber 👍🏻
Tahlia Dovey haha I just realized I said that😂 and thank you!!
tellmeastory95 aw thank you😊
Your disease might be the worst case scenario, but you are the best case scenario! You've already done so much with your life and helped so many people. You're achieving so much and you have so much purpose. Love you!
-Abby
MOLLY WTF WE HAVE THE EXACT SAME BIRTHDAY!!!! I am also turning 25!!!! #twins
NO WAY! Happy early birthday!!
@@MollyBurkeOfficial same to you Molly! Thank you for making all of our lives better with your presence!
I also have the same birthday!!
@@Maddie-qi7qk we're triplets!!
Molly! You are such an inspiration to me! Ever since I started watching your videos just a few months ago my perspective has changed so much about my own experiences with RP. The disease runs on my mom’s side (my mom, brother, cousin, aunt, grandma and great aunt have/had it as well). Growing up watching my mom, whose condition is much more severe than anyone in our family, dealing with everyday struggles of tunnel vision and night blindness has been a bit tough. I am 26 years old and only in recent years have I noticed my peripherals reallllllly start to get bad (it’s always been pretty meh and I’ve always had night blindness but recently it’s been noticeably worse). I feel really lucky that I was introduced to your channel and that you are a voice for this rare disease. Im also so blessed that I have a wonderful fiancé and friends who encourage me to be completely open and honest about my RP and are always willing to help me when I’m struggling in the dark or need a ride, etc. My mom had such a different way of going about it, like she was always trying to hide it and was ashamed. She hasn’t been working since she was in her early 20s and she lives a pretty isolated life. I aspire to have a positive outlook in life as you do, to travel the world and do all the things that you do despite your disease. You are an inspiration to me. Thank you, thank you, thank you!!
I love you so mich Molly!
much*
From what I think I know about you, you probably don't want to hear this but I was so choked up at the end of this video. I just want to give you a big hug. Love you, sweetheart.