ฝัง
- เผยแพร่เมื่อ 15 ธ.ค. 2023
- SUBSCRIBE to Truly: bit.ly/Oc61Hj
COME with us on a journey to discover 10 of the rarest conditions in the world, as we hear from the incredible people and families living with them.
Producers: Danny Baggott, Ruby Coote
Editor: Alex Saunders
Truly is on TikTok! / truly_show
Now you can watch our videos in Spanish!: bit.ly/Suscribirse_truly_ES
Click here to follow your favourite Truly shows on Instagram!
Truly - / trulyshow
Born Different - / borndifferentshow
Shake My Beauty - / shakemybeauty
Hooked On The Look - / hookedonthelookshow
Love Don't Judge - / lovedontjudgeshow
Beastly - / beastlyshow
Ridiculous Rides - / ridiculousridesshow
Dog Dynasty - / dogdynastyshow
For more amazing content, click here!
Beastly: / @beastlychannel
Barcroft Cars: / barcroftcars
If you enjoyed this video, check out our Born Different playlist: th-cam.com/play/PLUkdT9ljJ1cbFTk10utsTb-RGsujT5bG4.html
It's crazy but, when I saw her clearing the liquid medicine vial of air bubbles, it entered my mind "she should be a nurse"!🤗 Sweet😇 girl❤🙏long and happy future
Lauren's words of "there's gonna be a time where I'm going to need to be scared, and now's not the time" are actually so deep and profound. She has such a good point and I think I'll use that mantra in my day to day life
Lauren just breaks my heart. ❤
I am very moved by her courage and desire to help others. She does have a beautiful spirit and will of a warrior.
Wow this is so so deep. Be scared when it's time. Hmmm. Same new mantra.
Levi is so articulate and is able to explain his condition so well, he’s a wonderful kid and his mom is so sweet and compassionate
I was born without hip joints called bilateral hip dysplasia. When I walked, my hips swayed side to side which was really noticeable. Had many struggles and overcame so much. At the age of 32 I could not take the pain anymore and finally had hip reconstruction surgery. When I got married my friends and family saw me walk ‘straight’ down the aisle for the first time. It was a very happy day!!
That’s beautiful! Must have been the most amazing wedding day for you and your friends and family ❤️ glad you are feeling better
❤❤
Congratulations! I am so happy that you are happy and healthy! 👏🏻🥲
❤❤❤❤wish you happiness
Congratulations!😊
I’m very impressed with Lauren. She’s obviously extremely intelligent.
I also have a rare disease, and have lived 11 years longer than my life expectancy, so far.
And as a nurse of 32 years, myself, I’m thrilled that Lauren plans to be a nurse.
May I ask what rare disease you have? i have Prader-Willi Syndrome
@@ItsAAABatteryJuice_ Does this one include muscle weakness and constant hunger?
@@MercurialRed9 yes, it does
Congratulations to you 🎉! What an accomplishment, that’s why I always tell people that doctors don’t know everything. You should also be very proud of your nursing career. I bet you’re a compassionate and attentive nurse. Being in and out of the hospital probably helps you see so many different people.
I don't know if it's such a good idea to become a nurse, I mean it's a very stressful job and it will affect her heart pressure...I hope it won't lead to a diminished life expectancy...But who am I, I don't know maybe it's no issue at all and she can do that without any issue at all, I just wish she can fulfill all her dreams
Zion, your Mom emits 100% calm, sweet, and perfect. You have blossomed into an amazing young man. So happy for both of you.
She is an amazing woman!
Zions mom is an angel on earth. I absolutely love her and love that he has her ❤️ she looks like she could lift anyone’s spirit
I wish I had had a mom like her.
Her love for him just brings a happy tear and huge grin to😊 my face.
@@androgynylunacyI agrée and I would love to have a mother like her too
The way Isla began to look sad and lay her head on her mom’s shoulder when she saw her crying was just the sweetest thing. The compassion, empathy and love that sweet girl has for her mother is just beautiful.
“Isla” is my sisters name haha
Levi has a special gift. Someday he will be lecturing the medical community regarding his condition. He is brilliant already.
GOD will see him through in JESUS NAME AMEN!
The mother that adopted Zion is amazing. She clearly loves him and is proud. Gd bless special people like that
My mom had a very rare condition that caused her white counts to drop very low and if she got an infection at that time she could have died. I almost lost her when I turned 12 years old. When she was 53 she was diagnosed with breast cancer and unbeknownst to us the chemotherapy that she received to treat this cancer was also a treatment for her condition and she hasn’t had any issues with it for over 25 years.
Oof. I'm glad the cancer treatment ended up being a bigger boon than expected.
Amen! How great!! I'm so glad for her.
Wow! That's fantastic!
What a massive W. I am so truly happy for your mom
Wow! So incredible!
These people face two battles. One being the illness itself and the other living in a world where so few people understand what they’re up against. ❤️🙏
Very true. Not to mention the bullies are cruel. It effects you for the rest of your life too.
I have a rare alness, called gilles de la tourette, and we are always fighting two battles, but the battle is worthie so, no problem here
Profoundly true
⁸
You are so right. The first battle of people with rare disease may not have a cure. However, that second battle, there’s a cure for that: inclusivity, compassion & destroying prejudices.
I love how Carlie says ‘We’. ‘We have amazing doctors.’ ‘We have a solid plan.’ It’s obvious that her friends and family have wrapped her in a great support system, and she doesn’t feel she has to face things alone. Love it ❤
Levi has absolutely stolen me heart. He’s so sweet yet goes through so much he’s an incredible little boy. ❤
I feel the same way!! Levi is pure light ❤
Lauren is one tough cookie! She lives her life the way each and every one of us should be doing! She takes each day as it comes, prays for another day gone well and for tomorrow to be the same. She is smart as a whip and could have a career in about anything she chooses, I have no doubt! She knows where she’s been and where she is going…I definitely give this young lady kudus and two thumbs up! I know your mom is so proud 😊
So long as she has access to subsidized healthcare. If her state got rid of their version of medicaid, she wouldn't be able to afford the meds keeping her alive. People die from not being able to GoFundMe for their insulin.
Kids w rare conditions and/or disabilities stand out so much & are usually more intelligent than others their age for some reason 😊
Zion’s mom is a beautiful ray of bright & radiant sunshine! Adopt meeee ✋🏽❤
They're forced to know more about themselves than kids without those conditions.
They actually usually have cognitive deficits
Awwww Zion and his mom is such a great story. I wish they would have met sooner, you can tell she has the best spirit…. GOD bless you and your family
Lauren is an absolutely incredible young woman!!!! I hope she lives a very long happy life with her sweet pup!!!!! And i HATE how expensive it is to get medication to keep us alive!!!!
Its ridiculous and shouldn't be that way. Drug companies are the anti Christ.
All the people in this video are beautiful!! The families are so supportive.
I have Pulmonary Arterial Hypertension like Lauren and like Lauren also carry an IV pump with Remodulin in it. I was diagnosed in 2016 and my pressures were very high at the time. They diagnosed and admitted me to the ICU the same day within hours of my right heart catheterization. My main issue now is the peripheral neuropathy caused by my use of Remodulin. My legs hurt me constantly and it’s difficult to stand for more than 15 minutes or so. I need to use my electric scooter or a wheelchair for longer distances. I take narcotics to dull the pain as well. I’m happy to see that Lauren lives a fairly normal life despite the pump. She’s a brave young lady!
Don’t sell yourself short,Pitties mom. For you also a brave person❤
Levi you are the most adorable kid with the nicest mum in the world. I hope you get surrounded by nice people like you and your mum.
I have worked with a young man who was diagnosed with a rare disorder and thankfully both he and his family had always sought the best quality help and treatment for him. We were very excited when he came to our group home to seek help and independence. Over the next few months he really began to blossom and come into his own person, showing his family who he really was and that he was capable of overcoming his struggles and getting stronger everyday!
I had the rare outcome of surviving a grade 4 intraventricular brain hemorrhage that took place 2 weeks before I was born. Most babies who deal with this type of severe brain injury usually die , at a rate of 60%. Despite it, I was diagnosed with having spastic hemiplegia cerebral palsy which affects my left side of my body. I also had hydrocephalus and I still have the same shunt that I received when I was around weeks old.
You are a badass CPNinja! ❤ so very glad you’re here!
And you're intelligent, interesting, and probably attractive too.
My daughter was diagnosed with spastic hemiplegia cerebral palsy, and low functioning Asperger's. She's the strongest person I have ever known. I hope your life is as wonderful as you can imagine.
I have a friend who has down syndrome and alopecia, but she's a fighter. I have one of the most painful conditions, but it's not even visible. I have ulcerative colitis and it's non stop pain in my abdomen. These people are a true inspiration to me and I hope their and inspiration to yall too.
Dragon, I’ll start praying for you now! Promise!
I have my own rare syndrome but there’s still 60,000-80,000 people in the world who have it. Effects 1 out of 100,000 births. These kids are true legends.
It's not about the rarity, but the lifespan and symptoms
75k a month is WILD. we need free healthcare.
If we had free healthcare she would be dead already!
Makes me sick to imagine how much of that is pure profit.
Unfortunately the free healthcare in my country would probably not cover the medication because it is a rare disease and the price is too high.
@@pippilangkous5089the price wouldn’t be that high in your country. Your government would most likely stop the price gouging
@@grumpyboiinc52 You are sort of right: because our government is making price agreements for all the people in our country, moet of the time the price goes down because of the amount of medication they are negotiation about. However in the case of rare diseases we are talking about only a dozen of people. That is not a large enough number to negotiate with. Then we bundle forces within de European Union to get ist a little bit doen. In the case of the medication for pulmonary hypertension, I looked it up: under certain conditions it will be paid for. It costs a bit over 13.000 euros per valve in our country. So they got it a little bit down I gather.
I love Michelle so much!! She’s so cute and sassy and just RADIATES positive energy and good vibes like a star!
Lauren is an extremely mature and impressive girl. The way she speaks is just wow! I’m speechless. I hope all her wishes and dreams come true.
Michelle’s happiness is contagious!
Lauren, if by some chance you ever run across this comment, I just wanted to wish you all the luck in the world with your condition and with nursing school! I've been a nurse for over 20 years now, and I would be honored to work along side you some day. You're going to be amazing! Take care and be well, future nurse...YOU GOT THIS! ✌🏻💜🫂
There’s no way that those drugs should cost that much. Look what the drug companies charged for insulin? Insulin is super cheap for them to make but they charge a crazy amount. It’s just plain old greed . How sad that greed and money is more important than lives.
They made insulin cheaper but I guess as long as you have insurance! My other meds are way more. When I was diagnosed with type one they said I always had to have good insurance and made sure I always had a job. Diabetes is very expensive!
It’s big pharma. Look into it it goes way deeper. Many small pharmacies who try to help their patients get cheaper medication are forced to close down
These people and their families are great, in spite of the genetic conditions affecting them. Much respect for all of them.
Isla was the most precious baby. You can tell she has a lot of emotional intelligence and picked up fast on what other people were feeling and talking about. She’s a very clever girl.
Zion’s mom and wrestling coach are two of the most wonderful people on earth.
Kids like these always bring you back to reality no matter all the difficulties in my life I'm still blessed to have pretty good health at 66, all these kids are inspirations ❤
I love Zion's mom!
Lord Jesus
Please give Lauren the ability to get her meds after she's 18!! This is one amazing kid❣️❣️❣️
I have an extremely rare condition called transverse myelitis....it affects 1-8 people per million.
It can happen to anyone at any age but research has shown that it happens ages 10-19 and 39-45 for some reason. I was 39.
It stole my life as i knew it from me, it left me partially paralysed from the waist down with extreme nerve pain in both hands i also have lots of other smaller complications too.
There is no cure.
I look like the same person who just needs support to walk anywhere but inside im still grieving for the person i was.
I hope you can find happiness and joy in yourself one day. You’re amazing! Keep going
Thank you for being an inspiration for others! Some times it takes seeing another person fight to live to motivate someone else who is ready to give up❤
Crazy my grandmother had this 😢 came out of nowhere
@@UniqueSunShyne7 mine did too. Its a devastating condition.
God bless and keep you strong as you go through life. 🙏🙏🙏🙏💙💙💙💙💙
I wrote about Lauren, but then I met Zion and Michelle and deleted my comment because every single one of these people are amazing and inspiring! Thank you so much for this video and for giving us a chance to meet some pretty fantastic humans ♡
Zion just wanted to say your bond between you and your mom is like gold
These people make me feel kind of ashamed for sometimes feeling sorry for myself for my chronic conditions (pancreatitis, epilepsy, chronic pain, type 1 diabetes) which seem very small in comparison.
These people are so inspirational.
Don't feel ashamed, everyone's struggles are valid! Doesn't matter if you're drowning in 2 inches of water or 100 feet, you're still drowning. I've felt the same sometimes though, keep your head high and keep going
I feel the same.. it's weird bc I have all of the same conditions except diabetes but I do have crippling endometriosis, migraines and fibromyalgia.. it is tough to move most of the time and I'm so exhausted.. try to hang in there.. God bless ❤
@@jenpierce2385endo and fibro? Oof. Endo is so hard to get diagnosed, too.
I have a rare blood condition. My mom passed away at 34yrd old from it. There are 8 different strains or types of it. And there is a 50/50 chance of passing it on. I gave it to my oldest daughter but not her 2 sisters. Look up acute intermittent porphyria. My nana had it and gave it to my mom who gave it to me. My daughter is 11 and is starting to have more and more symptoms. She will be starting treatment at our local Cancer center mostly likely within 2 yrs . I've had 7 ports, too many picc lines to count, almost died 4 times in one month, and we have issues when we are in the sun too long. I give all of these stories much love and respect from my family we are definitely one in a million xoxo
Man Zion is truly a inspiration for me just watching 👀 this today and feeling like crap and not wanting to get up and go but just watching what he has overcome and his attitude towards life there’s no excuse for me to cop out and be negative about anything that god has given me…. He and his momma especially… what a woman she is! He’s lucky he found her and she is lucky she found him! She’s got her ticket 🎫 heaven and god bless them both and they deserve everything awesome that comes their way!
That frame of mind is going to make you feel worse and worse. Don't let these stories make you feel like you're not allowed to have your feelings or are not allowed to struggle.
I just love Zion's mom! She is a rare treasure.
the things these people have in common are that they are all so grateful to be alive. their positive outlook on life is so humbling. despite all the challenges they face, they embrace life and are all so happy.
My dad was a shriner for years .Drove his little car in parades. As he aged, he could not drive his car so they had an old pickup truck repaired it and he drove that for a few years. He was so happy donating his time at a special events to raise money for his hospital. This is a great plqce to donate.
For those curious to find additional information about what is affecting the boy in the first story (Levi), the name of the disorder is "Jansen Metaphyseal Chondrodysplasia".
This is life changing,I thought I have reason to complain about my health,but wow these are heroes,Im counting my blessings
What a great doctor Levi has- perfect personality for a pediatric specialist!
Aside from the obvious blessing each child/ young adult is ,I’m struck by the love, strength and resilience of the incredible Mothers ❤
You all have an inner beauty that travels further than skin deep. I now have cancer which isn't curable but managed I now have a different out look on life...Took 60 years and feel fortunate thank you all of you may your spirits be hi and you all are loved so much ❤❤
All these children are so amazing. They have wonderful support systems.
The parents and siblings of these people are simply amazing. As are the individuals themselves. ❤
Levi stole my heart ❤
All of you are very inspiring to me. I to had troubles as a child with a cancer that came to a point of no chance of surviving. I face challenges because of the extreme cancer treatments, but I am alive and watching this makes me realize how lucky I am . You are all so brave and wonderful God bless ❤❤love you all may God be with you all❤
God bless you ❤
Lauren speaks like an old soul. What an amazing young lady.
EtA: Laurens mom is also so strong and amazing.
Sweet lil Isla laying her head on her mama shoulder as mama was crying! Sending love and prayers to every child and their families on this video🙏🏻❤️! Love in Christ from Alabama USA
Why do you feel a need to shove your imaginary god friend into others? Get help
This is what should be on television and in schools. Just amazing and inspiring ❤
Levi is so funny and likable.
What a personality the first young man has.
All these amazing parents, going above and beyond ❤
Iyla is beyond adorable and I pray she lives a full life!
Some of these conditions look so painfull.
I m so with them and sending them all the love
Imagine beeing hungry all the time, must be a sad hollow feeling
I was very recently informed I’m incredibly high risk for Pulmonary Hypertension and I’ve been assigned to a pulmonologist who specializes in treating it. Right now, I’m good. The scarring in my lungs appears stable and I don’t yet have PH, but I know it’s a very high chance down the line. For now, my lungs are scarred heavily from a combo of blood clots in my lungs a few years ago and an idiopathic issue. So I’m on oxygen now and wow, the difference! My life is so much better with it!
Dang I want to be friends with these wonderful people! Michelle lets play some games together!!
Zions mom is an angel. ❤
Yet there's probably 1000 people right now crying their eyes out because of a bad haircut. These people freaking rock.
Man, that's the best comment! Smack...straight in the chops. Makes people think. ❤
@@lisacolledge7624 💯
i just was then i thought about my daughter a 1 in 5 million case of Junctional Epidermolysis Bullosa - Severe she got to live for 2 months and was in pain every minute of it she was so stronger than i will ever be
True..people can be so shallow
Girls you are the best.😊
if i would have half of the optimism, power and drive as any one of them, i would be very happy person
i think every single story brought tears to my eyes, such beautiful people, and all the parents doin a incredible job its heartwarming❤
He is such gorgeous boy he knows what he wants in life pure champion has a great spirit
Zion's mum is alsom, beautiful soul does she have, bless God this woman!
My son was born with congenital adrenal hyperplasia which is rare but not nearly as rare as these folks! His is like 1 in every 19,000 babies born! I was so confused and angry when I found out bc back then (20 years ago) there was little to no research or info to be found, no cure, only management! These people’s determination to live a good life despite their challenges is truly inspiring!
Lauren's drugs cost $75,000 a month. Hooray for health care in the U.S. This is a truly well done documentary, so touching. Thank you.
No, she is in CA, and her health care will no longer be covered by state child health programs once she is 21. Insurance will likely not cover it after that. I am from CA, I lost my health care at 21 also. I have epilepsy and can barely afford my medications and I am in NV now. Each state has its own programs, but NO UNIVERSAL health care in the nation. Insurance companies here are predators, they love the chronically ill. We are profit machines, but if you are too expensive, (like 75k per month) no one will cover you because they will be losing money.
Then throw a fit about illegal immigrants who literally steal resources from people who NEED them. Take care of our families first. Period.
It’s ridiculous what medical companies charge for their drugs. I don’t understand why they’re so greedy.
It's disgusting that it costs that much. Absolutely nobody can afford that.
@@hadla issue is the research costs a lot of money, nothing is free. Scientists spend a lot of money and time on their education, so they expect to get the money back, and then some. That said as drugs are on the market they should get cheaper and they don't.
All these people are amazing, but an extra special thank you to Carli and her parents for raising puppies for Canine Companions. I have Arizona V, We graduated February 2023 South Central Region. Your hard work is greatly appreciated!!!
Every one of these kids and young adults are amazing. I am 64 and I can’t imagine going through what they do. I also think that every one of them would be a wonderful friend. Thank you for showing what we should all be doing. Living each day to the best of your ability. You and your families rock!❤
The twins really look like their mother
Me and my mom are carriers for a rare genetic disorder called Allen Herndon Dudley Syndrome and last I knew we were the 26th family in the world. My son got diagnosed when he was about 7 yrs old which lead to my little brother's diagnosis some months later.
I lost my husband 4 mths ago after 44 yrs. I was feeling very sorry for myself. Then I watched this. I have so much to be grateful for after a long life with all the things ive taken for granted. Health, marriage, kids, career, happiness to name only a few. Im looking at my life differently now. Of course i miss my husband but we had a full and happy life together and im trying to turn loss into thankfulness. You guys make the rest of us look weak and ungrateful. Im sorry and im determined to do better after watching all you guys you are all heros. Love and prayers from me to all of you.X
It just goes to show, having a zit or bad hair day is NOTHING in comparison to these people. They are so strong. Michelle and Isla are the sweetest, they brought tears to my eyes 😢
I have a rare dwarfism as well called Geleopyhsic dysplasia and currently there is about 50 documented cases. My older brother and I were the first documented siblings with G.D. Sadly my older brother passed away due to complications from heart surgery a couple years ago
So sorry for your loss🥺
I know he is cheering you on from Heaven. Trust that you will be reunited.🤗🤗🤗
😢
They are all adorable and an example of what we should be. Kindness, compassion and innocent souls.
Zions mother is phenomenal ❤
Lauren I’m a nurse and I know you will be an excellent and compassionate nurse
Sweet young lady. Lauren I heard something recently that impacted me profoundly.
Life is 10% what happens to you, and 90% how you react to it. From listening to you., I get the feeling you already knew this.
🙏🙏🙏🙏🙏❤️😊😀😊😊
Lauren! Wow, absolutely fascinating and mature beyond her years. Her attitude is remarkable. I hope she lives many years and commend her for wanting to become a nurse.😊
Zion could play some great pranks on unsuspecting people, lol.
I have some health conditions that get frustrating sometimes BUT this group of kids reminds me that there is always something to be grateful for because if they find joy i sure as hell should
Levi is absolutely adorable and so smart!
Zion was on AGT 2023 and had my entire family in awe. He’s an incredible young man.
What a good Dad! So positive and comforting. ❤
Isla! I LOVE her! OMG!!!! Such a princess!
Lauren is absolutely amazing. Did it mention her age? Nursing school is college but she's still on kid insurance so... in her early to mid teens? Inspirational. And Natalia!! What a beautiful bright soul!!❤
Natalia is so strong and she's so intelligent.. God please bless these amazing kiddos ❤
Absolutely heartwarming!!!! Amazing young people!!! SO SPECIAL!!! .. and equally special parents/siblings/family. Sending hugs and love. Granny Carla. 🏴🇬🇧🥰🥰🥰🙏🏾xxx
Zion is amazing and his mother is wonderful. Good to hear he is on the right track.
I love the part with Zion's Mom. She knew she met her son and I think that's so beautiful for both of them.
I laughed, I cried, and it makes you really stop and think about what goes on with some people. God bless all of the people in this video. It's something that has truly touched my heart ❤️ ❤❤😊😊😊
Is it me or…. Isla’s dad is fiiiiiiine
I am currently caring for my niece who has the very rare brain disorder called lissencephaly. She was also born with Pierre Rubin syndrome. Her life expectancy was 2 years , this August she will be 25. Her brain is that of maybe a six month old, is not mobile. Verbal has a tube for feeding, however, eats by mouth, smooth foods because she likes it and it makes her happy. My sister who is her mother went into liver failure about 10 years ago. My brother gave her half of his, and it was very successful at the time, however she is now in liver failure again and in the United States you can only have one live donor transplant and since she already had some life-saving extension, she is very low on the list for a new liver. That is the only reason she’s currently in my care. She is the happiest ,self, soothing, self, entertaining miracle, Angel, ever we are blessed to have her in our family and count our blessings daily.
God Bless ❤❤❤❤❤
Levi’s a cutie pie. Love his personality. I will keep this good looking little guy in my prayers
The kid with Jansens is VERY well spoken. His character is refreshing.
Thank you for this.
My cousin married a young woman with a rare condition which causes her to grow tumors everywhere. She is constantly needing operations, to go into and out of hospital regularly. My aunt- her mother-in-law- says every gift Meghan gives them is experiential: things like going ziplining, things which create memories. She knows her life could end at any moment- as can any life- but, being keenly aware of this, she knows how to make the most of her time in a way that not all of us do. Anyway, Meghan seems to be an excellent daughter-in-law and wife, and I wish I lived close enough to know them all better.
*- I loved Zion's(sic?) quote:
"Haters are your biggest fans."
(It's secretly true, or they wouldn't be so bothered by you.)
I feel awful for Carly..... FOP is a torture sentence