JAREN WICKLUND: Self-injury ranges from biting the lip, the tongue, the cheek, biting any
part of the body he can get to.
JAREN WICKLUND: We have five children and the youngest of which is Davey and he has
got Lesch-Nyhan Syndrome.
JAREN WICKLUND: There’s pizza, ham sandwich and apples. What would you like right now?
DAVEY WICKLUND: Ham Sandwich.
JAREN WICKLUND: Ham Sandwich? Okay!
JAREN WICKLUND: In a nutshell, Lesch-Nyhan Syndrome is basically cerebral palsy. Davey
has got the extreme with self-injury, injury of self and injury of others.
JAREN WICKLUND: It’s very rare. It’s only in 1 in 380,000 births. They will bite their
fingers, bite their toes and if someone is close by, they will lean over and bite them.
Not that he actually goes for them but if you are close enough, his mind kicks in and
says, ‘I need to bite you.’
JAREN WICKLUND: To protect Davey from self-harm, we have to have more arm braces, keeps his
hands from reaching his mouth. We have had to make special kangaroo pouches for his legs
so his feet don’t kick too far. So basically you look at his wheelchair, he has got straps everywhere.
JAREN WICKLUND: If he turns around to see that there is anything hard he will hit his
head. Whenever he is near anything dangerous, it’s all covered.
JAREN WICKLUND: So at bedtime, we take him out of his hard armguard. We put this on him
and it goes over like this over his shoulder and you can see how long it is. He can freely
bend his arms but he can’t get to his fingers. These are other versions I made out of foam,
out of string trimmer. So all of these things, I have to redo because each time I make a
new thing, he out, he out manoeuvres it and finds a way to hurt himself. So, I end up
making another kind and another kind and another kind.
DAVID WICKLUND: And if he bites too much on his lip then we can put this in his mouth.
So that he will bite on this rubber instead of on his lip. So he kind of goes in phases with
the self-injury. Right now he is not needing this at all.
JAREN WICKLUND: So this is how he lives.
JAREN WICKLUND: 1 year, 4 months was when he started going like this with his lip and
it started to bleed more and more. It was the very first time we had ever seen it happen.
DAVID WICKLUND: He had no appetite either and he kept losing weight. So, we had to get
a gastrointestinal tube put in him so that we could feed him directly into his stomach.
DAVID WICKLUND: Someone with this syndrome is unable to produce a certain kind of protein.
Because of that, they can develop stones in their kidneys.
JAREN WICKLUND: You feel like going into your tummy?
DAVEY WICKLUND: Yeah, after.
JAREN WICKLUND: After?
JAREN WICKLUND: This has kept you alive for many years. Huh, buddy?
DAVEY WICKLUND: I am a baby.
JAREN WICKLUND: You are a baby. You couldn’t eat. Yup. Now, you can start eating. Right?
DAVEY WICKLUND: Yeah! Finally,
JAREN WICKLUND: Finally.
JAREN WICKLUND: 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.
I understand. But they love him deeply.
STEPHEN WICKLUND: It’s like a cat and mouse game, where whenever we make a solution he
eventually finds a way to still hurt himself. So it makes you really feel bad.
GRACE WICKLUND: Davey has really brought our family together. It’s sort of a connection.
It’s a really strong bond.
JAREN WICKLUND: Davey needs 24-hour supervision. Lesch-Nyhan Syndrome requires the caregiver
always be near him. Because we do all the, all the extra body care. All they have to
do is play with Davey and keep him entertained.
JAREN WICKLUND: We have gone through, how many? 5? 6? One has stayed 6 months, another
has stayed 4 days, another stayed 2. But the latest one, Cynthia, she has been a godsend.
JAREN WICKLUND: She came to us about 11 months ago.
CYNTHIA HOLLINS-SUMMERVILLE: The most rewarding thing is seeing him light up. It warms my heart.
CYNTHIA HOLLINS-SUMMERVILLE: As far as Davey’s disability, I haven’t seen anything like it before.
JAREN WICKLUND: Davey is 11 years old and he goes to the elementary school nearby.
MAN: Hello! How are you?
JAREN WICKLUND: They upgraded the whole classroom so that Davey can enjoy all the activities with the other kids.
DARCY RHODES: In my special ed classroom Davey fits in with everybody. He is just part of
the class. Other students don’t always, can't always understand him. He’s great
at math. He has to talk a teacher through his math problems. He is really sensitive.
He will even notice if I am having a bad day or if I got frustrated with a student. He
will say, ‘Miss Rhodes are you okay?’
JAREN WICKLUND: Average life expectancy, we are looking at the teens.
JAREN WICKLUND: Roughly 19 on to mid 20’s.
JAREN WICKLUND: It’s hard but we are actually able to make a life for him that will give him joy.
JAREN WICKLUND: I first thought he might die at a young age. So I bought a big camera because
I wanted the memories in case he did pass away early.
JAREN WICKLUND: I would always see pretty depressing shots of disabled kids. So I decided
I wanted to have the world know what it was like to have a child like Davey.
JAREN WICKLUND: Full of joy and disabled.
JAREN WICKLUND: He is a cute little guy.
JAREN WICKLUND: He is always laughing, smiling, making jokes, teasing us.
JAREN WICKLUND: And he does have his moans when he has pain. Obviously, he cries. But
he doesn’t linger on that very long and he is, he is, he is joyful.
JAREN WICKLUND: He can’t have a typical, normal life. But the best we can give him
is what we are giving him now.