“My Skin Rips With Every Movement” | Listen Up | ABC Science

[@megan00b8]

To make everyone realise just how brutal his condition is: look at his old photos and on how his looks change over time. His skin isn't that pale as a natural colour, his skin is that pale because it's basically 100% scar tissue. There is not a single point on the surface of this man that wasn't in some way damaged enough to draw blood. Not one bit. To survive like that, suffering grinding pain with every movement, that is a show of incredible resilience and I applaud it in every way. This is unbelievably incredible.

[@NapTheCreeper]

this guy can bench 330? what the hell is my excuse

[@levigrey2309]

Bro said "pain, I don't have time for that." The willpower on this man is absolutely incredible

[@カギ]

it's embarrassing that anyone would make fun of this guy. this is one of the strongest people on earth. anyone making fun of him is coming from a place of weakness and insecurity.

[@3van3rown]

I just had a really bad day. Tried to distract myself with the gym. Felt weak. It didn't help. This helped. Lord be with that man.

[@jefflawrence3894]

When you suddenly realize how easy your life has been

[@EnCounterCultureMedia]

"My life expectancy was 2-5 years but i break the rules" has got to be the hardest line ever

[@rorycarter6948]

“Too disabled to be independent, too independent to be disabled” gotta love services Australia doing everything they can not to give people the services they need

[@CotyTernes]

I'm in the USA and have multiple friends in the same situation. The lack of a proper bridge and support throughout the transition and beyond.

[@felphero]

I've had depression for about 18 years, ever since I was 15. I'm finally, FINALLY starting to get over it with alternative treatment. But look at me, totally healthy, "okay" looks I guess, I have a roof over my head, a house, a few friends, games, internet, KZbin. Life was always open to me and I just couldn't do it. This dude however, had the doors closed to him from day one and he just kicked them down and went in. An absolute legend, this guy is metal. Thanks for inspiring me to do better

[@LegendOfMoonDragons]

"First and only time I can remember walking completely pain free". I have chronic pain (nothing like this bloke's obviously), and it's CRAZY how much your mood affects how much pain you're in. Dude must've been so happy carrying the torch - as he should be. An honour he worked bloody hard for

[@lialousier3970]

My son is only 1 of 100 people worldwide with his rare genetics. He wasn't expected to survive his birth and he's now 12! Everyday can be a battle but you, Sir, are an OUTSTANDING Individual!! ❤

[@steffaninicole4480]

I'm so proud of his strength and so very proud of yours as his parent ❤ he is going to keep showing you daily God exists and is loving and protecting your family ❤

[@kristineelizabeth1277]

Bless his heart 🙏

[@leighleigh747]

I'm sorry 😢

[@PennsPens]

@lialousier3970 I truly hope this video of Dean fills your son with dreams and mental strength, so he too can achieve the unthinkable, rise above others judgment and cruel comments and to become the very best of who your son can be. Blessings to your entire family upon your unimaginable journey. ❤

[@bestfromtheeast]

God bless this man & his family nothing is bigger then God he loves us unconditional

[@NilsGJBruijel]

Not just lifting heavy weights but also lifting people up, he truly is the world's strongest man.

[@jamesodonnell4771]

❤

[@kellyryall3895]

I went to school with you for a short time back in 1991 to 92.. you have always been an inspiration to me. I'm so proud of all you have achieved. Every time I think of you over these years, it makes me smile. Thank you for been you 😘

[@blbmuzicearpleasure3884]

Awesome idk yall but i love yall stay strong keep inspiring folks

[@FireflyGirl68]

*being

[@persephone3309]

​@@FireflyGirl68 really?

[@ginger_wby]

​@@FireflyGirl68your correction is wrong.

[@InteracciónAnimal]

​@@FireflyGirl68,🙄

[@alainterieur5628]

I went to the same school as Jonathan pitre, who had RDEB (recessive dystrophic epidermolysis bullosa). He was a really kind hearted person and was passionate about school and hockey. He had a very brave soul and never gave up, but he was not as lucky as this guy here. He was always covered in bandages from neck to toe and had to take 4 hour salt and javex baths every 2 days to fight bacteria on his skin. At the age of 17 he underwent an experimental stem cell transfusion to try and help his condition, but sadly months later he got a bacterial infection and passed away due to septic shock. Rest in peace Jonathan pitre, you will not be forgotten.

[@Personalinfo404]

Im ex military, 6 years active duty, 2 tours. This guy has more spine and testicular fortitude than alot of soldiers I met during my enlistment. I hope I can one day find the solace and peace within myself the way this man has found within himself.

[@R3tr0humppa]

Him doing the Deadpool outfit, legend. xD

[@skartimus]

Bloody hell saying it would be best if you passed sooner as it would just get worse is a pretty horrific situation to live through. What an absolute legend.

[@thermonuculur]

"its the only time i can recall walking completely pain-free"

[@starkillerx2020]

so powerful

[@souzoushi0121]

I’ve had severe atopic dermatitis and causes the back of my thighs to have the first 2-3 layers of the skin out, unable to contain moisture, it was hard to sit down, I couldn’t wear pants, sometimes, I couldn’t even sleep and had to have my hands bound so I don’t scratch it unconsciously. I CAN’T EVEN IMAGINE HOW THIS FEELS, OH MY GOSH. YOU ARE ABSOLUTELY AMAZING .

[@Andrew-md6gh]

The fact that he has all his digits is amazing. I worked with a 10 year old kid who had this disease and he was missing almost all his fingers and toes. My heart aches for these people, never take a healthy normal life for granted.

[@Skubbes]

What the hell man, leave some strength and perseverance for the rest of us!!! Man I feel so sorry for myself until I hear about people like you. You’re a hero to me

[@dark7angel456]

Me too.. feel sad for people that get bad luck like this in life. I see how bad they had it and see how my depression isnt too bad compared, my depression is just from narcissists

[@34pers]

​@@dark7angel456dont look at others and dont judge yourself for feeling depressed...

[@WildWombats]

@@34pers It's totally fine to do that and I think it's just as unhealthy to say you should ignore everyone and everything else and just only do what suits you. We ARE social creatures. Seeing someone else in a much tougher spot or down on their luck then your own situation, yes, it can make you appreciate what you have and your position in life. It gives you more gratitude. You can ALWAYS seek to want more. That's not hard. You can always be discontent. But what you sometimes actually need is just a gentle reminder to appreciate some of the more basic things of life. It doesn't mean it invalidates all of your feelings. But it can give you that strength and motivation to carry on and appreciate what you do have. There is nothing wrong with that and i would even argue it is healthy. Whenever I'm down or in a rut, it always helps me to remember that no matter how bad I have it, someone else has it worse and they're chugging along. That gives me the extra strength to carry on myself sometimes. It can be a powerful tool. One that shouldn't just be disregarded entirely.

[@_gatsby]

bump

[@sal1488]

In islam, prophet Mohammed said when you feel not satisfied, look at the people who are in worse condition than you. like you have for example 200$ in bank, look at people in Africa who work for a full day just to get a cup of water and so on, this man is another example why we say Thank god

[@Young_padawan1]

Dudes a legend. To be so strong mentally and physically through all the pain is incredible. A real superhero.

[@carsensikyta9421]

He has the most genuine smile.

[@stevememc]

he truly does 😭🤎

[@JonSudano]

There should be a scifi/mystery novel with a character designed after him. Same condition, same badass mannerisms and sharp wit, etc. He'd be one of the coolest characters in fiction.

[@vaxfantomen]

To see this man smile, even as a kid, is just a treat. I can't possibly imagine the physical pain endured, but I can imagine how big his heart is.

[@MADEbySOUL]

The mental strength it takes for this much compartmentalization is nothing but aw inspiring!

[@keemajames2551]

I think you are beautiful!

[@Movetheproduct]

thank you@@keemajames2551

[@Aleph-Noll]

i like how his dog loves him so much. they obviously dont care about it, they are just balls of compassion

[@st0nedpenguin]

I love when people who were dealt a crappy hand like this are still capable of smiling and being happy.

[@nickhollow]

This man has one of the roughest lives. Yet he still lifts the roughest weights and keeps living on. Willpower of this man is insanely amazing. My respect goes towards him.

[@HurricaneBady]

Over 40 years old with this condition... You are a miracle! Seeing you do heavy lifting... its incredible with the skin condition you have! God bless you

[@daashazireael6613]

My husband has EB, he's 34 now. He was expected to live until 12 i think with his. His brother and sister and dad have it and my nephew. Somehow my daughter and other neices and neohews didn't develop it. He only has it on his joints thank God. But even then its severe pain and injuries every day. I'm absoljtley amazed by this story, we've never met anyone as old as the man in the video with EB. And its really heartwarming to see.

[@Plutonium.2]

Can I ask why you would have kids knowing there is such a high chance they would have this painful illness? It sounds like you got lucky but what a chance to take. You could have had a child that lived in nothing but agony

[@daashazireael6613]

@@Plutonium.2 i agree, but We didn't plan to have her. And I had already had 2 kids when we met so it was perfect, he adopted them. And despite taking birth control etc. I still got pregnant. I always would go back and forth on thinking his parents were selfish for having kids, because it could have been worse than EBS, and they had a hard upbringing with bullies and the pain, and they also moved a lot and had other problems as well. And I didn't get why they would choose to put their kids through that. But I can also understand falling in love with someone and wanting to have a family, being young as they both were and not fully understanding the consequences that could occur. A lot if people esp. Back in the day see having a family as the ultimate goal of being in love and married. So I can understand why people with EB have children and I also can logically understand that bringing a kid into the world who would live with pain, or die etc. Is messed up. I struggled with if I did the right thing choosing to keep her which we were lucky she didn't have it, and I am so glad I have her now becUse thats my baby. We did what we could to detect it before birth. Which was limited back then. We did genetic tests and everything and they came back fine but there was still a chance of her having it when she was born. The only peace of mind or some form of hope came from my neice and nephew never showing symptoms and they were about 11 when I had my daughter. But I totally understand where you're coming from because that was my way of thinking until I got pregnant and I had to make a difficult decision and I was lucky it worked out.

[@Plutonium.2]

@@daashazireael6613 thanks for taking it as intended and not a horrible attack. It must have been an anxious time during pregnancy. I totally understand the falling in love and wanting to create life with that person. What a terrible choice you had to make

[@daashazireael6613]

@@Plutonium.2thank you for being understanding I appreciate it

[@leighleigh747]

That's what I was thinking he's older than any other person I've seen

[@anynimus1617]

What an absolutely phenomenal person. that kind of personal strength and determination is truly humbling.

[@TimsWildlife]

Been sick for a year with lots of self pity. Then I see Dean. What a hero! ❤

[@bunnykait]

He teaches pain what to feel. This man deserves so much happiness

[@scenejack]

I'm a 30 year old grown man, 6'1, 100 kilos and struggle hard to bench 140 kg once. I see myself as a really strong dude. But against this guy i'm a weak dwarf. Crazy power!

[@exoticdachoo007]

"My life expectancy was 2-5 years but i break the rules" sounds so damn badass. Dean you're an absolute legend, your determination to keep on living despite this condition is so inspiring to every single person who is going through their own hardships, be it medical or emotional

[@ouchydoom]

This guy isn't just doing well for his condition; he's downright superhuman. Most people could only wish to have even a fraction of the strength of body and will that he does. His life is an example everyone should follow.

[@lopezrome1982]

Everyone in this world needs a friend like Dean. We can learn a lot from him.

[@williamsawyers5683]

I’ve just cried my eyes out at this dudes strength. What an absolute gentleman as well. Imagine a world with people like this in every home. Unbelievable he’s such a force of good.

[@Tsumi784]

I have never seen so much strength from a single person, i am praying for him.

[@wudly9195]

Absolute badass person . To be in constant pain your entire life , but still keep living and smiling too

[@KatieDeGo]

Dean, you are NOT scary looking. You are a hero and an amazing person ❤

[@feelincrispy7053]

Ahh yeah he is, stop denying reality. He knows it and doesn’t deny it. That doesn’t mean he isn’t an amazing person

[@haywire4686]

He IS scary looking, but that does not mean he is not a hero and an amazing person.

[@KatieDeGo]

​@feelincrispy7053 you may find him scary looking but I don't

[@erglwrgl]

He is but he's still cool

[@kirin1230]

​@@KatieDeGoIt's normal to find something you've never seen before strange or scary. Once you've seen him, or met him, or heard him talk like we have in this video, it stops being scary. Because it's not unknown anymore.

[@robertkersbergen82]

I think his story is one of the best examples of human resilience. Looking at the photos from his childhood I can't image how much pain he must have suffered. To overcome that, to learn to walk, live independently and thrive as a power lifter is beyond impressive. Truly inspiring.

[@tribehasspoken4038]

I wake up everyday fully functional , I hate that I don’t appreciate how blessed I really am, I’ve been in a state of constant depression and this shouldn’t be my life , I have so much to look forward to😢

[@RaspingPompano2]

I’m glad you’re still around to share your story. You are so much more tough and more of a man than I or many others will ever be. Thank You for sharing your story!!

[@ACUK82]

Had a tough day at work today and then I stumbled across this video, things instantly in perspective. What a guy.

[@58shortboard]

Dean you’re one of the bravest, most fearless people, I’ve ever seen. Wish you all the best

[@R3AL-AIM]

The baby pictures got me... Bless this man. Glad to see him alive and well. He's a mountain a joy for a man in his situation. NOT ONLY THAT, BUT MY GUY IS A BRUTE!!! Stay strong King.

[@huntercool2232]

I cannot express how much I admire this man’s resilience… I don’t think we can ever fully comprehend the pain he lives through every single second of his life yet he goes on and wants to live and make the most out of life. It really puts into perspective how much we take for granted and if this remarkable gentleman can make the most out of life then why can’t we?

[@moodl3d856]

for someone who was expected to fail, this guy is doing more than most people ever will, props to him

[@LeandroCavalcanteLeandrw]

I love how, in 1 second I got shocked about the video thumb, but as soon as I seen his smile and he talking so confident, I almost completely forgot his condition. You are a very strong man!

[@marundiir4241]

This might be the strongest person I have ever seen alive.

[@CMIA-t9v]

Dean, you have made me realize that even though I am coping with many serious health problems that i can make it, stop feeling sorry for myself, and to just be glad im here. GOD BLESS YOU AND I PRAY FOR ALL THE BEST BLESSINGS IN LIFE COME TO YOU AND YOUR FAMILY. I PRAY FOR YOUR PAIN TO CEASE. YOU ARE A HERO❤

[@kamilmcki8631]

God blessed him already as you can see, no need to ask him again

[@francegamer]

He has not only the look, but also the strength of a Harkonnen with none of their faults. A truly impressive individual.

[@thisismyusername6717]

1:35 i burst into tears.

[@XCircusBabyX]

Im glad to see this man is still fighting and seemingly enjoying his life.

[@sergeykozyrev5779]

It's hard to not leave a comment. This guy is a Hero. All my problems in life are absolutely nothing compared to what he is going through, while sincerely smiling at the pain. Thank you, sir!

[@kiingblue]

I really related to him when he said, "I became too independent to be classified as disabled, and then I was too disabled to be independent." I'm still fighting to get a proper diagnosis which means my employer doesn't have to respect reasonable accommodations, and chronic pain is invisible, so.. they kind of just assume I'm lying about the debilitating pain and I get fired or my hours cut within 6-8 months. I can't really provide for myself, but I can technically work, so obviously I MUST be able-bodied. 🙄 I respect Dean so much and I hope, like him, that I'm one day able to find something that fulfills me and gives me purpose :) I'm kinda running myself into the ground, but I'm doing by best with what I've got.

[@shutupluffy2]

The treatment the Australian government and Australian companies give disabled people of all stripes is horrendous. From situations as serious as yours and Dean's to situations as negligible as mine, facing the possibility being rejected a learner's permit for my autism, the institutions in Australia seem to want to find any reason to keep us down. But we'll keep going. We have to.

[@greenwarrior8971]

Hey there under any equality law youd Don't need a diagnosis. If you have had a condition for 12 months or longer which affects your ability to work ,you are classed as disabled. That's in the UK. Unsure where you are? Employers should make reasonable adjustments. If they don't it's possible discrimination. Good luck

[@kateworkman921]

I'm hoping this was already thought of for what you're dealing with, but could it be fibromyalgia?

[@schlik5042]

I can relate maybe not exactly with your condition. But I understand the frustrations of trying to prove the pain actually exists, and running yourself into the ground to act functional despite the very real problems you face, of which are ignored/brushed over. Keep yourself well fella.

[@ButtTurds-zs1oj]

sounds familiar..... i played varsity soccer when i was 15, super good shape then i got surgery to fix a leg problem i had, never been the same since, messed up my whole body, but yea, since i "graduated college" im not eligible for disability. and i dont really want it either, until those nights hit me like tonight where i have that boredom/despair feeling

[@EverlastingSpud]

This guy is a literal demi-god. A freak of nature and a being that could withstand such a condition and still live out a life on his terms. Screw the pain, screw the stares, and screw all the inconviences. He is incredibly powerful to endure such a life, and I have nothing but respect and admiration. He is better than me, along with many other lkke him. I hope nothing but the best for this gentleman.

[@alienJIZ1990]

I can't even fathom the level of this man's pain tolerance and sheer will

[@TwinShards]

He's filled with determination! Keep going man.

[@No-ue5pi]

It's always so interesting to learn about people living with these conditions that are so debilitating, and yet you see people persevere, and as an able bodied person I can't help but think "Wow, I could NEVER do what he's accomplished." It kinda puts things in perspective to see people living in what must just be constant physical pain, and the added mental anguish of the world around you treating you poorly if you have such a visible condition. I really appreciate folks like Dean coming onto these public platforms and sharing their experiences with us, inspiring and educating people, and maybe making the world a kinder, more accepting place to those who are "different." I think it's a good thing for people with conditions like this to be visible. I used to watch a lot of this kind of content, about people with conditions that change their appearance in unusual ways, and I honestly think it's helped me be more... I dunno, I guess "prepared" to encounter people who live with these conditions and be more normal about it. I think if you're more aware of what these conditions are and what they do, it helps you move past the initial negative reaction you might have when you encounter someone with a "scary" appearance. I think it's normal to be initially taken back, it's probably an instinctual evolutionary response because you're looking at something unusual and the unknown can harbor danger, but that's why this kind of visibility helps so much - it makes it not so unknown and thus not so scary. I bet most people pretty much got used to his appearance by the end of the video.

[@SE0ULsearching]

everything you said is very, very, true. i agree 100% on regards to what you mentioned about someone having an instinctual reaction to a person's appearance that isn't that of what were so used to, and conditioned to seeing. everything in your comment was very well worded and relatable! 🙌🏼 ❤

[@mro7432]

Nothing but respect for this man that didn't give up

[@nicholasweber7523]

I’m also a powerlifter and it’s hard enough healthy. This man is the toughest mf in the world 💙

[@emilianoc9261]

I clicked this video thinking i was going to feel bad at the end of it, instead I became inspired to fight what causes me pain just like this man does every day

[@mishtaromaniello8295]

3:51 Haha love the Deadpool costume, Dean obviously has a great sense of humility (and humor!)

[@skylarmae02]

he’s defying the medical odds & living a fulfilling life. you rock Dean.

[@mizflowers]

It's interesting that his skin seemed more durable at age 43, like the toughness of adult skin keeps it together more and he can endure the pain with less risk of bleeding? I don't know. He's awesome anyway

[@lena_lark]

I guess it's the scarring

[@sackme4377]

It's scarring from 43 years of cuts every minute.

[@smurlix5676]

If you suffer damage in a certain area for a certain time, the body will start to adapt and ignore the pain.

[@uvcat2bkittenme620]

It’s probably just all scar tissue buildup at this point. Each time your skin rips or breaks, it becomes thicker and less fragile.

[@Ixaglet]

It's all scar tissue now by the looks of it.

[@DvanderPluijm]

I am going to add this video to my favorites. Every time I start to feel sorry for myself, I will watch this again and realize how easy my life has been and still is. I will watch this and smile each time I see Dean's smile and hear his laugh. You, sir, rock, and I wish you a long and fullfilling life!

[@99Sumi99]

What a great man. I myself was and still am struggling with back issues and it's been tough to deal with, to grieve the life I've "lost". This man is a huge inspiration, he's just pushing through. I wish I can have as much willpower to live, as this man. Major respect.

[@ASMhorror89]

Jesus, I can't stop crying... I have psoriasis since 2009 and can't imagine how hard and difficult life must have been for Dean. Thank you very much for your strenght, your way of seeing life and for charing your amazing and powerful story. You are such an inspiration. Now I want to be better. For myself and for everyone around me. May life bless you every single day, beautiful boy!! Thank you, thank you, thank you...

[@jacquesc0usteau]

Dean you’re an absolute champion, thank you for sharing your story. I’m so happy you’ve had such a full life, you deserve all the opportunities you’ve had! I hope you continue to see success in everything you seek in life ❤ you’re an incredible role model!

[@designerheiner7471]

The strength that some people develop is absolutely mind-boggling and truly inspiring. Thanks for sharing your outstanding story.

[@23toxic23]

Wow what an inspiring guy. That had me all choked up. Kind of an awakening to everyone I think.

[@aminino]

What an absolutely POWERFUL spirit this human hosts!!

[@andrewbell7579]

This man is incredible, i cant fathom how much pain he is in yet can soldier on. A true inspiration.

[@shawncollard623]

One of the most genuine people I have ever seen. We need more Deans in the world.

[@lukabeast1150]

This guy is a effing warrior. So inspirational man. Like seriously the things this guys has overcome

[@ffkerror]

this guys skin as strong as wet paper but he stil goes for sport, what a true warrior

[@IBMe50]

I'm beyond grateful to hear your story. My granddaughter has EB. She is now 8yrs old. It's been very difficult for my son and his wife, but they've done an amazing job with her. Take care to this community as a whole! ❤

[@nathanhallisey441]

Thanks ABC, you put a smile on my dial with the story about Dean.

[@kylescott7654]

i was hooked from the start seeing the infectious smile you have in every photo. but that 330 bench....i cant even imagine the amount of time and second guessing GETTING THERE. blown away. this was a big motivation for myself. LETS GO DEAN!

[@craighorn3642]

What an inspiration. An absolutely amazing human being.

[@kitnoshot9779]

This is the most tenacious and strong human being i have ever seen, I could only hope to be even a fraction the character as he is. You are an inspiration thank you.

[@Tretnix13]

What an amazing person, going through all that pain but still loving life! I hope all the best for him!

[@zx6rlew.150]

What an absolute inspiration... I have so much respect for people like this. And it comes as a realisation that my chronic sciatic pain was a really a papercut in comparison to this guy... Well done for weightlifting hope you have all the happiness you deserve!!!!

[@d0ntreply]

think about the level of strength and will to continue to live through constant and daily pain. i can't imagine that. i don't think i could ever be anywhere near as strong as this guy. shows that some people truly are the strongest people on earth.

[@edwinacaparelli9911]

Amazing resiliency here. It's beautiful to see somebody survive what they weren't supposed to at all it just shows how life pushes through. Its beautiful.

[@maskedmarvyl4774]

This is one of the strongest people I've ever seen. He doesn't let any pain or obstacle stop him.

[@Gabriel.1985.]

What a gentle kind soul this man is. I literally cried tears while watching his face transform as a kid bc it looked so painful. This man's an inspiration and is truly beautiful ❤️

[@quietwulf]

Your courage in the face of incredible adversity is inspirational. Thank you for sharing your story and for inspiring hope. Showing people that it wasn’t easy, that you had to fight for every step, but never stoped. Wish you all the very best.

[@jumpingjacks5558]

What an awesome guy. He has so much to live for and has accomplished more than most.

[@Leo-nj3dq]

What an absolute inspiration this man is! It’s such an awful painful condition to live with and this brave man lets nothing hold him back!! I smiled from beginning to end watching this man defy the odds and hearing and seeing how much he has achieved! Thank you for this upload! I wish this amazing man all the love, respect and all the best from Newcastle 🇬🇧 💯

[@IndyStry]

The world said he could live 2 - 5 years but he said "Naah, imma do my own thing." Totally deserves a movie made about his life. To live life with non stop pain but block it actively just to enjoy the small things, he deserves a standing ovation. LEGEND.

[@Noob0perator]

An absolute inspiration. When you think life’s tough….. BE LIKE DEAN! Strong, resilient, proud, confident and loving! ❤️

[@tommyfanzfloppydisk]

man..and then there is me, and maybe you too reading this, sometimes thinking we have it hard. Dean is an embodiment of strenght and resiliance, one of the true real few we can encounter during our life, examples that always humble us and make you strive to become just a little more like them.

[@kathyharmon2093]

As a nurse and a human being I just wish they could figure out a way to make you pain free ❤

[@TheMeJustMe75]

My son was born with a chromosome defect and each person who has the defect has it affect a different chromosome. Some people have mental and physical defects while some have mental and developmental defects. My son didn't talk or really walk until he was 2. The docywho diagnosed him said it would be hard to know if he was going stop growing mentally or physically. He's 12, plays clarinet in junior high band, plays soccer and has taught himself how to do yo-yo tricks. He does struggle in school but he's recall on things is remarkable. He has traits of autism but he isn't autistic. He's extremely outgoing. We still don't know if he'll live independently as an adult though.

[@Aesza]

I was born with glass bones and paper skin. every day i break my legs every afternoon I break my arms, at night I lie awake in agony as my heart attacks put me to sleep.

[@ohoktess2444]

I’m sorry you have had the pain of living with such a misfortunate disease, Dean. However you are a real trooper, and survivor! Little to no one can relate to your day to day struggles! Hang in there my friend. You are one of the strongest & you’re a gift to earth!