@@YaeGalvus Yes-that 's what they invented it for. Paul Alexander was amazing. I binge-watched videos of him a few years ago and learned that he was a lawyer. I was so glad that he was able to live his life to the extent that he did. 😊
I have FOP too, and have met Ashley several times. She's amazing and a wonderful soul. This disease sucks but you've got to make the best of the life you're given. Her mom is incredible just like mine. Love you, Ash, hope to see you again soon!
The thing I find so sad is that the answer of everyone on this channel is always; "I'm just a human being". Which means many people, apparently, react negative on their appearance in the general public.
Not to mention the people that always want to offer "helpful" advice, as though your doctors know nothing. And then they'll caveat that the know someone who had something kinda like sorta what you have and they took vitamin A and cured it. Well meaning, but oh so unhelpful and demoralizing.
Yah I used to work with adults with varying special needs, people need to take a damn class in high school that introduced them to people that are different. The ignorant poor behavior from adults when we were out always floored me. I think this channel is great and I appreciate all they do!
She's your *FULL-TIME MOM* ...I was blessed to be a *FULL-TIME MOM* when my eldest son became paralyzed and bedridden after he fell ill with bilateral pneumonia at age 31, fell comatose for a month on life support and awoke a month later - paralyzed from the chest down. I immediately quit my job ( I had retired 6 years prior and started a 2nd career with a community college) and became a *FULL-TIME MOM.* God allowed me twelve years with my beloved son, even after doctors told me to take my son off life support (they said he was brain dead) when he was in a coma...but I refused since we had just lost his father to cancer three months earlier. I miss my son tremendously...but I relish the 12 years of memories I was graced with in being a *FULL-TIME MOM* . ❤
God bless you. You’re one very beautiful soul for sure & your heart is so loving. I’ve lost so MANY loved ones including my mom & sister both only 4 weeks apart. My infant brother when I was only 8yrs old. Life is definitely challenging. I can honestly say love continues to grow more inside me, regardless of all the pain & tragedies I’ve endured. God reminds me he’s got me. I miss my mom beyond any words. She was my best friend too. Her daily hugs were everything to me. I know your son cherished EVERY SINGLE MOMENT he had with YOU without a doubt. Much love to you. 🙏❤️🙏 ♾️
Thank you for sharing your story with me. I am so happy that you were healthy enough to be that full time Mom your son needed. Beautiful memories. Fulfillment .
FOP affects only about 400 Americans a year! Median life expectancy is 56 years. I saw a new FDA (first one ever) was approved in 2023 for FOP. The drug, palovarotene, reduces ossification of connective and soft tissues. I was so happy to read about this since this condition is ultra-rare. What a beautiful soul ❤ ❤
That part made me a bit sad. If the mother didn't say anything, then she would have thought they were old, and her reasoning for giving them a pass is valid. But because the mother maybe felt forced to make that joke, or was self conscious, she said "they weren't old, they were my age!". It's little things like this that cause a feeling of "disconnect" between people. They make it clear they appreciate each other, probably because they know they cannot communicate perfectly, as the disconnect is there. This also explains why she won't even talk to her for a couple of days when she is in a funk.
I kept thinking, “wow, she sounds like she’s a great friend” especially when she was talking about being there emotionally for her friends & wanting them to feel comfortable telling her about their own struggles.
I do not intend to say anything seemingly negative because I love this channel and these people are absolutely wonderful. Regarding your comment she did say she is on Anti depressants, which makes a profound difference in attitude, every level and overall outlook. She says she would likely cry a lot more if she wasn't on them. I just don't want others thinking -what's wrong with me why can't I be more positive she's in a worse situation than me.- maybe if they were prescribed medication it could help them with that. Serotonin, dopamine and oxytocin are the key to happiness and all regulated by the brain, which sometimes needs a little help. I have a friend who was on anti depressants and had to stop taking them to get pregnant and have her baby, and her whole outlook on life changed. Her energy level was way down, she was overall sad and experienced more negative thoughts. So please no one get down on yourselves for not being as positive as her in your situation. 🤍
I’ve followed Ashley’s story for yikes 15 years? Since I learned about FOP. She was one of my inspirations to study genetics. I’m so glad to see her still going strong!
She’s so empathetic to her mom, it’s beautiful really. She’s not even upset she lost her arm she’s appreciative that not having it makes it easier for her mom to dress her. She’s one amazing human, if only everyone could be so grateful for life and those around them the would would be a much better place
I remember first hearing about her on the show "Mystery Diagnosis". I'm sorry to see that she is bedridden now, but she still seems like such a strong and positive person.
Thank you, that's why she looked so familiair. All the time in this video I thought: I know a woman with FOP and she lost her arm also bc they thought it was cancer.
This is why I clicked on the video! I so vividly remember watching that Mystery Diagnosis episode when I was little. I'm so sad for her loss of mobility, but so happy to see her again and get an update on how she's doing. I'm also glad that she's fine with having lost that arm, because that mistake was so gut-wrenching.
I'm bedridden from a different condition and not as limited. You made me more grateful. Thank you for sharing your story. I'll be your friend if you want.
I wanted to take a moment to express my heartfelt gratitude for your tireless advocacy for those of us living with FOP. Your courage, strength, and unwavering commitment to raising awareness about our rare condition have made a profound impact on our community. Your voice has not only educated others about FOP but has also given hope and inspiration to those of us facing the same challenges. Thank you for showing the world that our condition doesn't define us, and for fighting to improve the lives of everyone affected by FOP. Your dedication to advancing research and support for our community is truly admirable. Ashley, you are a beacon of light for the FOP community. Thank you for being an incredible advocate, role model, and source of inspiration for all of us. 🙏
Wow! What a beautifully written tribute. You’re obviously a very smart and articulate fellow. I hope you have as many supportive friends around you as Ashley seems to have. I pray that you will have the least amount of bone for the longest amount of time. 🙏 Much love to you from New Zealand. 🥝🇳🇿😎
She’s also an amazing advocate for broader conditions too. I have a condition called Klippel Feil (and I have a very severe version of it). As a kid, I never found someone with my condition to look up to, but I found her. KFS is a lot like FOP, except its not progressive. We are born with the fusions and skeletal abnormalities, and they stay that way, other than secondary progressive characteristics like arthritis and bone spurs that result from the abnormal joints. My relationship with my dad is a lot like hers, and my needs are similar, so she really made me feel less alone.
I loved that she casually mentioned that anti depressants have a very critical use during traumatic or difficult periods of our lives. I am so grateful for how lexapro helped me past some of the worst months of my life ❤❤❤
@@carriefawcett9990 not to mention the withdrawal symptoms can be disabling and even permanent for some people. For me, getting off antidepressants was the worst experience of my life... Never again.
Someone who struggles with a disease that slowly losing my sight. Hear your life story and how you still dealing with life. The positive attitude you have is such a fresh breath of air cause I feel the same way as you. Thank you so much sharing your story.
What an amazing lady. I have a rare autoimmune disease Dermatomyositis. That disease causes me to have Dysautonomia. Which is my autonomic nervous system to go haywire. I can not cool myself off so in spring and summer I have to hibernate in my freezing cold room. I try to keep a positive attitude. I will not complain about my not being able to walk very well. My disease is a muscle and skin disease. At least I can walk and get to my many doctors appointments. So sad but glad she has lived way longer than the Doctors predicted!!! I am glad her family knows her worth! She is such a prize to this Earth! I wish she has many more years with her family.
I wonder if I have that...I cannot stand being in the sun/])heat. I've been checked for literally everything and nobody can figure it out. They were actually thinking I was pre menopause at... 20...!Apparently not, because I just had a surprise baby at 44😂 I always have the air conditioner on me and I have to be very careful to bundle my baby so she is comfy and warm (which means I'm uncomfortably hot most of the time!) People think I'm crazy walking around half dressed while picking up snow and rubbing it on my forehead 🙃
I've got dysautonomia (specifically POTS) but not the $$ to do tests to figure out whats causing it, but highly suspect autoimmune disease. i literally just had to turn on my A/C after having it off for only half an hour bc i felt like i was about to pass out 😅 wishing you good health days and that flare ups are few and far between for you, friend ❤
I remember watching Ashley on the show “Mystery Diagnosis” many years ago. It’s sad to see how FOP caused her to be bedridden, FOP is a such a horrible disease!
Yep! Age is no excuse. My mom's great-aunt fostered a bunch of kids with disabilities for a time in the 1960s or 70s when her own children were grown. I remember my mom telling me how fiercely my great-aunt looked after and loved those kids. I also remember my mom telling me how when my mom was a kid, in the 70s I think, my grandma worked in one of the facilities they had back then for disabled children that some of those parents back then washed their hands of. Mom told me how attached she got to them. I think that work was extremely emotionally difficult, and she didn't do it for more than a couple of years at most. My grandma also raised a daughter with cerebral palsy, who lived independently in an inter-abled relationship as an adult before dying too young of cancer, and didn't blink an eye at me, her blind granddaughter. A far cry from my paternal grandmother who was definitely more distant and reserved. Anyway, my maternal grandma was born in the late 1920s and my great-aunt sometime in the 1900s or early 1910s I think. All I am getting at here is that there's absolutely no reason, not even age, to be an ignorant, ableist bigot.
I have the utmost admiration for parents/family members who are caregivers of people with special needs. The love they have to have to basically devote their life to take care of them. May God bless them greatly.
Awwwww! Ashley is wonderful! She’s so sweet, and her beautiful mom is the very best! God’s blessings, Ashley. You have my prayers. Sending you so much love and light.
I have to admit that as someone with chronic illness I have had nightmares about not being able to move. It's really amazing to see that she is able to live a full life surrounded by people who love her and support her, even if things aren't perfect.
What an amazing outlook despite her condition! She's the kind positive that lifts people up. I also love her fashion choices. Red glasses, plum lipstick and green suit - bold and beautiful.
the individuals on this channel always remind me of how grateful I should be for what I have as despite their limitations they never seem to give up. thank you! 💕💪🏻
I do not know where the human tenacity comes from to live a life like this and many others that we've seen on this channel. I'm constantly blown aaway.
The humility and deep love that her mother harnesses are beyond commendable. She wins mother of the year every year. I wish everyone could be like her. ❤️
wow. this gives me hope i can have happy days again. i have chronic, hard to treat depression with 1.5 decades of therapy and many meds. Having a bad afternoon. This gives me hope.
I saw Ashley few years ago here in YT during one of their FOP meeting, I listened to her story and seeing her again today makes me glad. She can be bedridden but she has not lost her love for life. She's definitely a warrior! Ciao Ashley and mom from Florence, It.
I wish there was a way to do a SBSK pen pal program. I guess you'd have to be mindful of weirdos (maybe screening by SBSK and then SBSK forwards?). I'd just love to tell these people they are loved and special and continue on the blessing.
I feel like it could work like those online bill pay systems. (Someone pays their bill online, a check gets issued and mailed on their behalf IRL to pay that bill.) a viewer could type out their letter, it gets reviewed and approved by SBSK (or an approved person), a physical letter is printed and mailed to the SBSK Friend!
I love this idea! There could be a place people could submit their po box or something if they wanna connect with people and anyone who's interested can write to them
YOU inspire me. I’ve endured “9” close family member deaths within these 6 yrs. Including my mom & sister both exactly 4 weeks apart to the date. Seeing the bond you have with your mom, reminds me of the EXTREMELY CLOSE bond I had with my mom. She was my best friend. We gave each other a hug EVERY SINGLE NIGHT before bed. Even me being a grown adult. We continued the hugs every night. I would give anything to feel her hug again. 😢😢😢 Continue to stay positive & cherish every single moment with your mom. We all seem to have something the other doesn’t have. We’re all blessed as you said, we just have to remind ourselves of the blessings & try hard not to focus on what we don’t have. YOU seriously touched my heart tonight. Thank you SO MUCH. You’re more than human, you’re BEAUTIFUL beyond this earth & your HEART and encouragement is BIGGER than this life. God bless you & MUCH love to you and your amazing gorgeous Mom. 🙏❤️🙏🥹♾️ 🤗 Hugs.
Just wanted to say hello to Ashley and her dear Mom. I think Ashley is so positive and upbeat. It’s interesting to hear about her life and how she lives with FOP. One of my dear friends was diagnosed with a progressive form of ALS. Ashley reminds me very much of my dear friend. How Ashley tells her friends it’s okay to be sad or upset over things that happen in their own lives. My friend wanted to hear about our days, how we were doing, what made us happy, what made us sad. It’s easy to see that Ashley is an amazing person and a precious friend to all lucky enough to be in her circle. Wishing her & Mom and their loved ones all the best!!!
ashley, if you’re reading this i love your glasses, lipstick and cane, i can tell you’re creative and have a great sense of style! everything is carefully chosen, coordinates and shows your personality! thank you for sharing some of your life with us, you seem like a joy to be around. i have MDD so it’s like a constant fistfight in my brain to try and be positive about anything, my brain chemistry simply hates me, but i’ll think of your happiness and strength next time im really struggling to embrace life and accept things. one of the bad things about this channel is seeing people i would love to be friends with irl haha, but glad i could at least meet you this way :-) hope you have a great day :-) thanks also to ashley’s mom, you seem so kind and i hope you have a great day too! ❤💜💚
Thank you Ashley for showing that a life in bed can be a good life! I wholeheartedly agree with that - I basically live in bed too and only get in my wheelchair 1-2 times a week, sometimes even less. Still, all in all life is good and I’m glad to be here.
Ashley, you are one in a million!!! Your attitude is definitely what keeps you going and your parents are a large part of molding that attitude. You go girl!!
I use to work at a day center and one of the people I helped had this condition. She was in a lay down wheelchair but had functions with her hands. She did live at a county hospital but we would pick her up every day to take her to the center. She had the same thought of life, and postive spirit.
Reminds me of the man with an iron lung. My heart goes out to her, makes you feel grateful for what you have.
I don't know if you know but he died a month or two ago. He was amazing.
The same thought came to me. Both of them, extraordinarily inspiring human beings, such positive and loving souls.
@@claudiarobinson587yea 😢
Yeah but he only got the iron lung cause of having polio
@@YaeGalvus Yes-that 's what they invented it for.
Paul Alexander was amazing. I binge-watched videos of him a few years ago and learned that he was a lawyer. I was so glad that he was able to live his life to the extent that he did. 😊
holy shit this woman is so much stronger than most people who have ever existed
You're telling me! 💀💀
She's incredible ❤
No lies told😢
You took the words right out of my mouth. Godbless her and mom
Cause of her family being there for her with out them she and all of us in the same position will crash.
She said "obviously I'm adopted" right after I thought that they look so alike❤
had the same exact thoughts!
thats what i thought too!
same here… she looks just like her mama. beautiful ladies. 🩷
Thank you great interview. ❤ Much love
Yes, I agree she looks like her mother.....
I have FOP too, and have met Ashley several times. She's amazing and a wonderful soul. This disease sucks but you've got to make the best of the life you're given. Her mom is incredible just like mine. Love you, Ash, hope to see you again soon!
🤟🏼🙏🏼❤️
❤
❤
bless you
❤ God Bless you both
The thing I find so sad is that the answer of everyone on this channel is always; "I'm just a human being". Which means many people, apparently, react negative on their appearance in the general public.
people with disabilities get stopped and asked/told the most ridiculous, rude things in public. it definitely feels dehumanizing.
And the fact that disabled people existing around people makes ableists rage, and they’ll say “You’re inconveniencing us” and “Just stay home”
Absolutely. She is a human being and nothing but.
Not to mention the people that always want to offer "helpful" advice, as though your doctors know nothing. And then they'll caveat that the know someone who had something kinda like sorta what you have and they took vitamin A and cured it. Well meaning, but oh so unhelpful and demoralizing.
Yah I used to work with adults with varying special needs, people need to take a damn class in high school that introduced them to people that are different. The ignorant poor behavior from adults when we were out always floored me. I think this channel is great and I appreciate all they do!
She's your *FULL-TIME MOM* ...I was blessed to be a *FULL-TIME MOM* when my eldest son became paralyzed and bedridden after he fell ill with bilateral pneumonia at age 31, fell comatose for a month on life support and awoke a month later - paralyzed from the chest down. I immediately quit my job ( I had retired 6 years prior and started a 2nd career with a community college) and became a *FULL-TIME MOM.* God allowed me twelve years with my beloved son, even after doctors told me to take my son off life support (they said he was brain dead) when he was in a coma...but I refused since we had just lost his father to cancer three months earlier. I miss my son tremendously...but I relish the 12 years of memories I was graced with in being a *FULL-TIME MOM* . ❤
"full-time mom", I really like that phrase
God bless you. You’re one very beautiful soul for sure & your heart is so loving. I’ve lost so MANY loved ones including my mom & sister both only 4 weeks apart. My infant brother when I was only 8yrs old. Life is definitely challenging. I can honestly say love continues to grow more inside me, regardless of all the pain & tragedies I’ve endured. God reminds me he’s got me. I miss my mom beyond any words. She was my best friend too. Her daily hugs were everything to me. I know your son cherished EVERY SINGLE MOMENT he had with YOU without a doubt. Much love to you. 🙏❤️🙏 ♾️
Thank you for sharing your story with me. I am so happy that you were healthy enough to be that full time Mom your son needed. Beautiful memories. Fulfillment .
@@fmt_Guåhan thank you for sharing this.
She said "obviously I'm adopted" but when the mom first came on screen I thought they looked so much alike.
I agree! And Mom is also so beautiful❣️ 🥰
I thought the same thing. 😊
Why did she even have to mention that she was adopted? She is your mom, period!! Your biological mom was just an egg donor.
Me too. They definitely appear very similar.
Me, too!!😊
Soulmates dont always have to be a romantic thing, these two were destined for each other.
What a lovely thing to say ❤
Awww Im so glad to see Ashley again , even if she is bedridden now. Bless her.
What was the other vid with her in it called
@@amritheamriandshermanshow7777 It will be on here on his bio.
I would also like to see that video.
@@elainenicholls7648me to
@@amritheamriandshermanshow7777, she was on an episode of Mystery diagnosis
For a lot of my patients, “care partner” instead of “caregiver” feels more positive and emphasizes least restrictive care ❤
Never heard this term before, but I love it! Thank you for sharing ❤
Thanks!☺️
I like that, because it implies that you also care back, perhaps in a different way, but it signifies you’re in it together.
I’m in bed pouting like a child over the end of a bad relationship and you’re remaining a smiling bad ass! You are amazing.
Your pain is also valid, friend. I hope that peace and comfort find you in this time ❤
It’s ok for you to be sad. You can’t help how you feel . I hope you feel better soon .
Right? Great reminder of perspective
I feel that! I bet it takes a lot of time and resilience to get to where she is now
Emotional pain is a horrible weight to carry. You have to grieve, it's part of the healing process.
This woman is the definition of "look on the bright side". She's awesome!
Ashley, the most positive person ever with a beautiful Mom. Love and hugs to you both.❤
♥️
FOP affects only about 400 Americans a year! Median life expectancy is 56 years. I saw a new FDA (first one ever) was approved in 2023 for FOP. The drug, palovarotene, reduces ossification of connective and soft tissues. I was so happy to read about this since this condition is ultra-rare.
What a beautiful soul ❤ ❤
I bet it's unfortunately very expensive and not covered by Medicare and Medicaid for sure.
Can they undo the fusion once it happens or is it irreversible once it does happen?
@@terryfilkohazi2237 Probably not covered 😔
@@WildWombats Unfortunately, it’s preventative only.
@@WildWombatsit's irreversible, once it's bone it's bone.
"She's been my number one human my entire life."-Ashley "I like that"-mom. I like that too...what a beatuiful relationship they have!!
“They weren’t old they were my age” love it !!!! ❤❤❤ she’s blessed to have a mother with a great sense of humor and a nurturing heart ❤️
That part made me a bit sad.
If the mother didn't say anything, then she would have thought they were old, and her reasoning for giving them a pass is valid.
But because the mother maybe felt forced to make that joke, or was self conscious, she said "they weren't old, they were my age!".
It's little things like this that cause a feeling of "disconnect" between people. They make it clear they appreciate each other, probably because they know they cannot communicate perfectly, as the disconnect is there.
This also explains why she won't even talk to her for a couple of days when she is in a funk.
@@roachdoggjr45
oh for gosh sakes lighten up.. Ashley does.
Carrying resentment and negativity makes you old fast😮
Ashley is a wonderful lady. I would love to have her as a friend. I have never seen a bedridden person so full of life and so vibrant 😊
She's a great person. I'm so glad to call her a friend. She is like this off camera. So sweet and genuine.
I kept thinking, “wow, she sounds like she’s a great friend” especially when she was talking about being there emotionally for her friends & wanting them to feel comfortable telling her about their own struggles.
@@kevinkeener3216 thanks for the reply. I hope Ashley reads these comments and sees just how awesome everyone thinks she is 😊
I do not intend to say anything seemingly negative because I love this channel and these people are absolutely wonderful. Regarding your comment she did say she is on Anti depressants, which makes a profound difference in attitude, every level and overall outlook. She says she would likely cry a lot more if she wasn't on them. I just don't want others thinking -what's wrong with me why can't I be more positive she's in a worse situation than me.- maybe if they were prescribed medication it could help them with that. Serotonin, dopamine and oxytocin are the key to happiness and all regulated by the brain, which sometimes needs a little help.
I have a friend who was on anti depressants and had to stop taking them to get pregnant and have her baby, and her whole outlook on life changed. Her energy level was way down, she was overall sad and experienced more negative thoughts. So please no one get down on yourselves for not being as positive as her in your situation. 🤍
What an amazing woman. Her mother is amazing too.
This is humbling to say the least.
I’ve followed Ashley’s story for yikes 15 years? Since I learned about FOP. She was one of my inspirations to study genetics. I’m so glad to see her still going strong!
All the best wishes for your study, Alyssa!
She’s so empathetic to her mom, it’s beautiful really. She’s not even upset she lost her arm she’s appreciative that not having it makes it easier for her mom to dress her. She’s one amazing human, if only everyone could be so grateful for life and those around them the would would be a much better place
amen
That Mom is a true Hero!
Ashley is too.
Wow, her adoptive mother is literally an Angel. God bless her.
I remember first hearing about her on the show "Mystery Diagnosis". I'm sorry to see that she is bedridden now, but she still seems like such a strong and positive person.
Thank you, that's why she looked so familiair. All the time in this video I thought: I know a woman with FOP and she lost her arm also bc they thought it was cancer.
I remember that episode
This is why I clicked on the video! I so vividly remember watching that Mystery Diagnosis episode when I was little. I'm so sad for her loss of mobility, but so happy to see her again and get an update on how she's doing. I'm also glad that she's fine with having lost that arm, because that mistake was so gut-wrenching.
i shouldn't be surprised that there are so many of us sbsk viewers that also watched mystery diagnosis!!
@@FgursMy fave show as a child for some reason 😂
I'm bedridden from a different condition and not as limited. You made me more grateful. Thank you for sharing your story. I'll be your friend if you want.
What an amazing woman. Her mum is also an angel. Takes a special person to be a full time carer
I wanted to take a moment to express my heartfelt gratitude for your tireless advocacy for those of us living with FOP. Your courage, strength, and unwavering commitment to raising awareness about our rare condition have made a profound impact on our community.
Your voice has not only educated others about FOP but has also given hope and inspiration to those of us facing the same challenges.
Thank you for showing the world that our condition doesn't define us, and for fighting to improve the lives of everyone affected by FOP. Your dedication to advancing research and support for our community is truly admirable.
Ashley, you are a beacon of light for the FOP community. Thank you for being an incredible advocate, role model, and source of inspiration for all of us. 🙏
❤🤟🏼🙏🏼
Wow! What a beautifully written tribute. You’re obviously a very smart and articulate fellow. I hope you have as many supportive friends around you as Ashley seems to have.
I pray that you will have the least amount of bone for the longest amount of time. 🙏
Much love to you from New Zealand.
🥝🇳🇿😎
She’s also an amazing advocate for broader conditions too. I have a condition called Klippel Feil (and I have a very severe version of it). As a kid, I never found someone with my condition to look up to, but I found her. KFS is a lot like FOP, except its not progressive. We are born with the fusions and skeletal abnormalities, and they stay that way, other than secondary progressive characteristics like arthritis and bone spurs that result from the abnormal joints. My relationship with my dad is a lot like hers, and my needs are similar, so she really made me feel less alone.
I loved that she casually mentioned that anti depressants have a very critical use during traumatic or difficult periods of our lives. I am so grateful for how lexapro helped me past some of the worst months of my life ❤❤❤
Lexapro did absolutely nothing for me.
@@carriefawcett9990 It's different for everyone, just because it doesn't work for you doesn't mean it can't work well for others
@@carriefawcett9990 not to mention the withdrawal symptoms can be disabling and even permanent for some people.
For me, getting off antidepressants was the worst experience of my life... Never again.
She literally just gave me insight on how much I should be happy. I love this lady. Id love to meet her. Beautiful soul
What a special momma and a special lady.
I salute your mom she is what every human should aspire to be. I wish you the best and strength. God bless you.
Attitude is everything - what a great attitude this woman has, we could all learn from her. Beautiful ❤
Isn't that the truth !
She’s got a wonderful role model in her lovely mum.
Ashley, her Mom, and Chris are unbelievable people. ❤️
Someone who struggles with a disease that slowly losing my sight. Hear your life story and how you still dealing with life. The positive attitude you have is such a fresh breath of air cause I feel the same way as you. Thank you so much sharing your story.
♥️
@@RogueWave2030
You will be thanking and praising God soon 🙏🙏🙏🙏
@@carolsaylor6151 Why would someone thank and praise a ‘god’ that causes a disease that leads to blindness?
❤
What an amazing woman ❤ And her mom is the sweetest ❤
What an amazing lady. I have a rare autoimmune disease Dermatomyositis. That disease causes me to have Dysautonomia. Which is my autonomic nervous system to go haywire. I can not cool myself off so in spring and summer I have to hibernate in my freezing cold room. I try to keep a positive attitude. I will not complain about my not being able to walk very well. My disease is a muscle and skin disease. At least I can walk and get to my many doctors appointments. So sad but glad she has lived way longer than the Doctors predicted!!! I am glad her family knows her worth! She is such a prize to this Earth! I wish she has many more years with her family.
You said it all
I wonder if I have that...I cannot stand being in the sun/])heat. I've been checked for literally everything and nobody can figure it out. They were actually thinking I was pre menopause at... 20...!Apparently not, because I just had a surprise baby at 44😂
I always have the air conditioner on me and I have to be very careful to bundle my baby so she is comfy and warm (which means I'm uncomfortably hot most of the time!) People think I'm crazy walking around half dressed while picking up snow and rubbing it on my forehead 🙃
I've got dysautonomia (specifically POTS) but not the $$ to do tests to figure out whats causing it, but highly suspect autoimmune disease.
i literally just had to turn on my A/C after having it off for only half an hour bc i felt like i was about to pass out 😅
wishing you good health days and that flare ups are few and far between for you, friend ❤
@@KuraiKaNinja It's awful that medical costs are too high for many people to get the help they need.
Blessings to you.
Miss Ashley is the definition of the phrase
An attitude of Gratitude ❤ Simply Beautiful
Blown away by this lady's courage, resilience and personality. Plus the strong love between her and her lovely mum.
This lady is a true hero!!!! Love her mom too❤
She should write a book. I want to be her friend.
Me too!
Me too! 😊
Me too!!❤
Same here
Spot on❤
I absolutely LOVE her spirit!! We can all learn a thing or two from this sweet and brave woman 💯🙏💕👌
I've met one person with FOP before in my career as a doctor, extremely rare. I feel so sorry for this woman but she has strength!
wow just wow. her attitude and gratitude for life is so inspiring 🥰
What an amazing love between mother and child ❤
What a beutiful soul. Amazing human.
I’ve been following Ashley’s story for ten years. Thanks for sharing and keeping us up to date on her!
I remember watching Ashley on the show “Mystery Diagnosis” many years ago. It’s sad to see how FOP caused her to be bedridden, FOP is a such a horrible disease!
@@a.j.marcantonio153that’s where I found her too!!
This women is beyond inspirational
Come on, old age is not an excuse to be rude. And doesn't earn respect automatically.
Ashley and her mum are AMAZING!!! ❤
I was laughing bc her mom said she wasn't that old they were my age 😂....I don't see my parents as old I don't like to
Yep! Age is no excuse.
My mom's great-aunt fostered a bunch of kids with disabilities for a time in the 1960s or 70s when her own children were grown. I remember my mom telling me how fiercely my great-aunt looked after and loved those kids. I also remember my mom telling me how when my mom was a kid, in the 70s I think, my grandma worked in one of the facilities they had back then for disabled children that some of those parents back then washed their hands of. Mom told me how attached she got to them. I think that work was extremely emotionally difficult, and she didn't do it for more than a couple of years at most. My grandma also raised a daughter with cerebral palsy, who lived independently in an inter-abled relationship as an adult before dying too young of cancer, and didn't blink an eye at me, her blind granddaughter. A far cry from my paternal grandmother who was definitely more distant and reserved. Anyway, my maternal grandma was born in the late 1920s and my great-aunt sometime in the 1900s or early 1910s I think.
All I am getting at here is that there's absolutely no reason, not even age, to be an ignorant, ableist bigot.
What a beautiful and courageous woman! Thank you for sharing your story Ashley. Count your blessings everyday!
What an amazing mom she has!
What an amazing mother! ❤
What an amazing human being she is. Glad she decided to be interviewed.
I have the utmost admiration for parents/family members who are caregivers of people with special needs. The love they have to have to basically devote their life to take care of them. May God bless them greatly.
Awwwww! Ashley is wonderful! She’s so sweet, and her beautiful mom is the very best! God’s blessings, Ashley. You have my prayers. Sending you so much love and light.
What a positive amazing woman! 🥰
One brave lady living her best life. Wonderful to see xx
Truly
I have to admit that as someone with chronic illness I have had nightmares about not being able to move. It's really amazing to see that she is able to live a full life surrounded by people who love her and support her, even if things aren't perfect.
What an amazing outlook despite her condition! She's the kind positive that lifts people up. I also love her fashion choices. Red glasses, plum lipstick and green suit - bold and beautiful.
one of the most inspirational things I've ever seen, god bless this woman and her beautiful caring mom
the individuals on this channel always remind me of how grateful I should be for what I have as despite their limitations they never seem to give up. thank you! 💕💪🏻
Yes absolutely! I have limitations but nothing in the world like Ashley's!
@@RogueWave2030❤🙏
💯❤️😊
Ashley you're a lot braver than I ever would be
Love her! She is an inspiration! As well as her mom!!🙌
True
Wow!! She is an amazing woman! What an inspiration! God bless her‼️🙏🏻♥️
"I can't live in your invisible plastic bubble." Profoundly true on so many levels. ❤
Oh my goodness what a strong woman with an amazing attitude and outlook on life
Those are two strong women. 💪🏻 I am so impressed with their honesty, courage and determination. Positive thoughts and best wishes to them both.
I do not know where the human tenacity comes from to live a life like this and many others that we've seen on this channel. I'm constantly blown aaway.
The humility and deep love that her mother harnesses are beyond commendable. She wins mother of the year every year. I wish everyone could be like her. ❤️
This lady has a better outlook on life than I do, I wouldn't still be here if I were in her shoes..
wow. this gives me hope i can have happy days again. i have chronic, hard to treat depression with 1.5 decades of therapy and many meds. Having a bad afternoon. This gives me hope.
Wishing you strength. 💕
Don't make comparisons. Your illness is also hard to deal with and is your own trial.
She’s a beautiful person & her mother is lovely.
I saw Ashley few years ago here in YT during one of their FOP meeting, I listened to her story and seeing her again today makes me glad. She can be bedridden but she has not lost her love for life. She's definitely a warrior! Ciao Ashley and mom from Florence, It.
She is so likable and relatable.
I wish there was a way to do a SBSK pen pal program. I guess you'd have to be mindful of weirdos (maybe screening by SBSK and then SBSK forwards?). I'd just love to tell these people they are loved and special and continue on the blessing.
I feel like it could work like those online bill pay systems. (Someone pays their bill online, a check gets issued and mailed on their behalf IRL to pay that bill.) a viewer could type out their letter, it gets reviewed and approved by SBSK (or an approved person), a physical letter is printed and mailed to the SBSK Friend!
@@SabrlIna I would love to be a part of that. These special people have helped me through my own problems!
I love this idea! There could be a place people could submit their po box or something if they wanna connect with people and anyone who's interested can write to them
She's on Instagram
shes an adult you can just contact her
YOU inspire me. I’ve endured “9” close family member deaths within these 6 yrs. Including my mom & sister both exactly 4 weeks apart to the date. Seeing the bond you have with your mom, reminds me of the EXTREMELY CLOSE bond I had with my mom. She was my best friend. We gave each other a hug EVERY SINGLE NIGHT before bed. Even me being a grown adult. We continued the hugs every night. I would give anything to feel her hug again. 😢😢😢 Continue to stay positive & cherish every single moment with your mom. We all seem to have something the other doesn’t have. We’re all blessed as you said, we just have to remind ourselves of the blessings & try hard not to focus on what we don’t have. YOU seriously touched my heart tonight. Thank you SO MUCH. You’re more than human, you’re BEAUTIFUL beyond this earth & your HEART and encouragement is BIGGER than this life. God bless you & MUCH love to you and your amazing gorgeous Mom. 🙏❤️🙏🥹♾️ 🤗 Hugs.
Shes a very strong woman! God bless her.
She snd her mother both are wonderful ❤️
Just wanted to say hello to Ashley and her dear Mom. I think Ashley is so positive and upbeat. It’s interesting to hear about her life and how she lives with FOP. One of my dear friends was diagnosed with a progressive form of ALS. Ashley reminds me very much of my dear friend. How Ashley tells her friends it’s okay to be sad or upset over things that happen in their own lives. My friend wanted to hear about our days, how we were doing, what made us happy, what made us sad. It’s easy to see that Ashley is an amazing person and a precious friend to all lucky enough to be in her circle. Wishing her & Mom and their loved ones all the best!!!
Ashley is an amazingly uplifting person!!
What an incredible and resilient woman. Sending Ashley and Tickles an abundance of love ❤️
My god how much a lot of us can learn from this beautiful soul, she exudes positivity and a unique prospective
Wonderful to meet Ashley, what a superb example of a human being. An inspiration.
This is the kind of human that could change the world. Wish everyone could think, feel, and act like her. What a treasure she is.
Ashley is warm and positive.i have seen her on youtube and no matter what is going on she keeps going and always looks to the future
Ashley you and mom are an amazing and inspirational people! God bless you!
God bless you precious! Will be praying for you and your family.
She is a delightful woman….. way more positive than most people.
Ashley, you have the outlook on life that everyone should have. Thanks for sharing your story with us.
There's nothing like a mother's love ♥️ I love how Ashley doesn't see her mom as her caregiver, just her mom 🥺
ashley, if you’re reading this i love your glasses, lipstick and cane, i can tell you’re creative and have a great sense of style! everything is carefully chosen, coordinates and shows your personality! thank you for sharing some of your life with us, you seem like a joy to be around. i have MDD so it’s like a constant fistfight in my brain to try and be positive about anything, my brain chemistry simply hates me, but i’ll think of your happiness and strength next time im really struggling to embrace life and accept things. one of the bad things about this channel is seeing people i would love to be friends with irl haha, but glad i could at least meet you this way :-) hope you have a great day :-) thanks also to ashley’s mom, you seem so kind and i hope you have a great day too! ❤💜💚
Hello! What is MDD?
What a beautiful soul. Your mom is truly an angel in disguise. I wish you a long and happy life.
She is has a strong heart and mind.
She's so positive and sweet! And i absolutely love the relationship between her and her mom!! What a blessing!
Thank you Ashley for showing that a life in bed can be a good life! I wholeheartedly agree with that - I basically live in bed too and only get in my wheelchair 1-2 times a week, sometimes even less. Still, all in all life is good and I’m glad to be here.
Ashley, you are one in a million!!! Your attitude is definitely what keeps you going and your parents are a large part of molding that attitude. You go girl!!
This is my reality check to stop complaining or feeling sorry for myself. I have so much to be thankful for.
Ashley! You and your mom sound like such sweet, beautiful people! Blessings to you both!!❤❤
She has the absolute best look out on life! I can't imagine having to go through what she has to do everyday. Bless her heart! What a beautiful lady!
Your positive attitude is such an inspiration. Thank you for sharing your story.
You don't need another word or term dear, "mom" says everything❤❤❤
I use to work at a day center and one of the people I helped had this condition. She was in a lay down wheelchair but had functions with her hands. She did live at a county hospital but we would pick her up every day to take her to the center. She had the same thought of life, and postive spirit.