By Shannon Lane @shannonroselane
Scroll down for the full story
Videographer / director: Andres Aponte
Producer: Camile Rocha-Keys, Ruby Coote
Editor: Josh Halil
Davey Wicklund, 11, from Renton, Washington, has a rare inherited disorder that affects his muscle control called Lesch Nyhan syndrome.
His mother, Jaren, explained to Barcroft TV: "We have five children and the youngest of which is Davey and he has got Lesch Nyhan syndrome, which is very rare.
"In a nutshell, 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."
Due to a genetic mutation, someone with Lesch Nyhan Syndrome is unable to produce the enzyme hypoxanthine-guanine phosphoribosyltransferase (HGPRT) causing a build-up of uric acid in all body fluids.
The syndrome is known by its three major characteristics; neurologic dysfunction, self-mutilation and uric acid overproduction.
Jaren said: “The self injury ranges from biting the lip, the tongue, the cheek, biting any part of the body he can get to. So you will notice on his arms there are scars, he can reach here by the fingers, by the toes and if someone is close by, he will lean over and bite them.
"He was about one year and four months when he started, all of a sudden he was sitting there, he started biting his lip. And it started to bleed more and more.”
His father, David, added: “Initially, he had no appetite either. And he kept losing weight. So, we had to get a feeding tube so we could feed him directly into the stomach”
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.
Jaren said: “To protect Davey from self harm we have to have him wear arm braces, keeps his hands from reaching his mouth.
“We’ve had to make special kangaroo pouches for his legs so his feet don’t kick too far.
“If you look at his wheelchair, he’s got straps everywhere.
"At night time we want his arms to be free so I have made him these super long arm covers that are flexible so he can move around and still not get his fingers.”
Davey requires 24-hour supervision, but luckily he is surrounded by a loving family that take turns in caring for him.
Jaren said: “My other kids love Davey, they know he needs help. Sometimes they do resent having to help because they want to live their own life and do their own thing, but they love him deeply.”
Davey’s brother, Stephen, said: “It’s like a cat and mouse game. Whenever we make a solution he eventually finds a way to still hurt himself so it makes you really feel bad”
His sister, Grace, added: "I think that Davey has really brought the family together, its sort of a connection, it’s a really strong bond.”
The family have also hired a carer for Davey, Cynthia Hollins-Summerville.
She said: “The most rewarding thing to me with caring for Davey is seeing him light up and happy and laugh when we’re playing, it warms my heart to see him like that.”
Despite his condition, Davey still attends the local elementary school in a special education class.
His teacher, Darcy Rhodes, said: "In my special ed classroom Davey fits in with everybody. He is a great reader. He is a great friend to the other kids in this class. He’s super, he’s really sensitive towards other kids and especially he notices needs or if somebody else is upset.
"He’ll even notice if I’m having a bad day or if I got frustrated of a student. He’ll say 'Miss Rhodes are you okay?’"
There is no cure for Lesch Nyhan Syndrome, so all Davey’s family can do is control his kidney damage and self injury through medication and control.
His mother said: “The average life expectancy, you are looking at the teens, roughly 19 to mid 20’s, there has been few of them who made it into 40’s.”
To document Davey’s life, Jaren has taken up photography and takes daily pictures of her family.
"I first started photography because we weren’t sure at first what diagnoses Davey had. I thought he might die at a young age so I bought a big camera, which I normally would not do, with the expense and all, and I started to capture him because I wanted the memories in case he did pass away early,” Jaren said.
"I would always see pretty depressing shots of disabled kids so I decided I wanted to have the world know what it was like.
"He’s a cute little guy, he is always smiling and happy and having fun with the family and so that is really my main motivation now to do photography because I wanted to spread awareness of disabilities.
"He cannot have a typical normal life, but what best we can give him is what we are giving him now."