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A young boy faces a daily battle with a rare condition which causes him to severely injure himself. Davey Wicklund, 11, from Renton, Washington, has a rare inherited disorder that affects his muscle control called Lesch Nyhan syndrome. Davey’s mother, Jaren explained: "Lesch Nyhan syndrome is basically cerebral palsy with self injury. Davey has got the extreme. He cannot stand, walk, he cannot pull his head up for long time, independently. He has got the muscle strength, but not the ability to control.” The parents have to take special measures daily to ensure that Davey doesn’t hurt himself; including arm braces, kangaroo-type pouches to tuck his legs in and a rubber mouth contraception to stop him biting his lip.
Videographer / director: Andres Aponte
Producer: Camile Rocha-Keys, Ruby Coote
Editor: Josh Halil
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Heart breaking 😥😥,I'm still lucky my 2nd child have only a light autistic ,slow learner and slow deveLop,his now 16 but im thankful GOD let me have him untill now, just thank GOD coz He just only give you trials maybe at some point in your life you realized how lucky that GOD gave you that pretty son,,God bless your son
As I watched I wanted to cry I'm so blessed that I have 3 healthy kids because at one point of time I was told I couldn't have kids. And God has blessed me to be able to carry my twins and my other daughter.
Ah, Some guys have all the luck.
I was born with glass bones and paper skin.
Every morning I break my legs, And every afternoon I break my arms.
At night I lie awake in agony until my heart attacks put me to sleep.
I’m sorry but that is no quality of life, he is someone who has to stay in restraints of some kind for life ! And be on a cocktail of drugs, this is no life he will never know friends or love...many severely disabled people have very rich lives full happy, productive, but when you add major mental illness into the mix especially extreme self harm and violence....the humane thing to do would be euthanized him, for the most part I’d never feel that way, but this is one of those extreme extreme cases.
Expect to receive a lot of hate. Disabled people are seen as God's compare to fully able human. You shall be cursed upon for saying such comment. P.S. I agree that this is not an ideal lifestyle.
If this person would of be born hundreds of years ago he would most likely not survive, but the technology we have today plays a role into his life longevity. Maybe in the near future there will be a cure for this handicap.
I'm curious to know if the child was born while both parents were drunk or their eating habits, sleep habits, etc. Could this be prevented? Is it a random occurrence? Wish him all the best.
Many many years ago there was a kid at my intermediate school that had autism and cancer he had a really good life he Only Live to 12 he was always fun to be around, always cause mischief if he didn't have the cancer he would have had a great life he was diagnosed with cancer at the age of 4 months old
Some disabled kids have no quality of life. Davey is not one of those kids. He has a wonderful family and an amazing smile. He deserves all the love in the world and it's heartwarming to see how much everyone around him truly loves him.
Davey seems so happy and he sure is loved by his family! He seems very charismatic and you probably can't be angry with him for long :)
I worked in a home for disabled people for about two years and one of the residents has lesch nyhan syndrome. He was the most chilled dude I ever met and also very charismatic. Working with him wasn't always easy since he would just hit you or himself if did not handle him right or were to slow. He could not control this and was always so sorry. He said that the devil in his head would take control of him and make him hurt himself. He almost has nothing of his lips left, removed his upper teeth himself and beat himself blind in one eye. But in overall he is a very caring and humorous person. Anyways he turned 33 this year and is still doing great.
I hope Davey will be protected enough to not do this to himself! I wish him only the best! :)
Davey's parents, I undestand you love Davey, however please give him a chance to be a normal kid ! Instead of limiting his movements, you should help him make his movements purposeful and useful. It IS possible to make him use his hands to do normal things and legs to walk ! Preventing him to move only does worse for him. I totally understand this is very severe cerebral palsy and many doctors say it is impossible, however I'm saying this after talking with specialists who say this is definitely possible.
My english isn't very good so I cannot explain many things here, however I would say one thing - wheelchair and all the braces are very BAD for him ! You say yourself that his life expectancy is very short, so if you want to give him at least a CHANCE to live longer, please take the wheelchair and all the special equipment away from him. Also you have to make him to eat by himself, not by stomach tube.
I understand what I'm saying sound bizarre, however I have a reason for saying all that. PLEASE give Davey a chance !
You may think you're helping but you absolutely are not. Having a wheelchair is NOT bad for him. It is literally allowing him to participate and not just be alive but live. It allows him to participate in activities that are fun for him. And no, they don't have to "make him eat by himself." Feeding tubes are amazing and help people thrive. This is about quality of life, not you wishing that things were different... His parents are doing amazing and they've already given him a chance. Your comment is super hurtful.
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