I just wanted you to know that you and your husband are INCREDIBLE parents. I don't think you get told that enough. God sent Davey to the best of the best. The love, patience and attentiveness just ooze out of you. Absolutely amazing. May God bless you in abundance.
People like Davey's parents make me have more faith in humanity. He's probably really grateful for the amount of effort you're putting into helping him
Make the seat cushion bucket Lower. Cut out the rear of the cushion so the hips sit lower than the knees if he’s able to tolerate it. Thanks for sharing.
They lack a critical enzyme transfer to the brain called hprt. What they don't know is WHY that causes them to think of ways to self injure. They don't want to, but the urge is so strong that it is hard to fight. And they do hurt from it and have no pleasure in doing it. It is an uncontrollable action which requires us to protect them from themselves. Daily struggle made only liveable due to his protective gear.
Hello. We are a family with a child with Lesch Nyhan Syndrome and we would like to contact you to see if you can help us by indicating a solution to avoid lip injuries. Could you tell us how to contact you? Thank you
Please join our Lesch Nyhan group on Facebook. So many of us can help support your family thru this ❤️. Let's connect thru there once you are a member :). facebook.com/groups/106039789454449/?ref=share
It seems like parents like this were made for children and to take care of these children I couldn't do it I can't believe how these people can do this it seems so second nature and very easy for them
Not easy, sad to say. It is extremely difficult every day but it is the life God has entrusted to us. We eventually got into the rhythm of life as we adapted. My friend knows of our hardship and she says their family would never make it if it were her, but one never knows until they've experienced it :)
![It's time to sit down... // Mobility Aids 1 [CC]](http://i.ytimg.com/vi/e77wkKOnC6s/mqdefault.jpg)
![Lp. Сердце Вселенной #60 РОЖДЕНИЕ ЛОЛОЛОШКИ [Финал] • Майнкрафт](http://i.ytimg.com/vi/YoR0pAV9FVQ/mqdefault.jpg)
I just wanted you to know that you and your husband are INCREDIBLE parents. I don't think you get told that enough. God sent Davey to the best of the best. The love, patience and attentiveness just ooze out of you. Absolutely amazing. May God bless you in abundance.
So very kind of you to say so. Thank you.
I am in awe ! wow … what a great design! That is a lot of love that went into this chair ! It is genius … Sending lots of love to your family !
People like Davey's parents make me have more faith in humanity. He's probably really grateful for the amount of effort you're putting into helping him
He tells us every day that he loves us and is thankful 💕
Beautiful family ❤
daily more vids more views..thanks for sharing his life this a great opportunities to share with us about diseases
What a wonderful family
Make the seat cushion bucket Lower. Cut out the rear of the cushion so the hips sit lower than the knees if he’s able to tolerate it. Thanks for sharing.
hello! i hope he's doing really well now
It is a constant up and down in his life, but he remains a kind, loving kid despite it :)
@@lifeofDavey ❤
New subscriber here...Do they know why these children try to
hurt themselves?
They lack a critical enzyme transfer to the brain called hprt. What they don't know is WHY that causes them to think of ways to self injure. They don't want to, but the urge is so strong that it is hard to fight. And they do hurt from it and have no pleasure in doing it. It is an uncontrollable action which requires us to protect them from themselves. Daily struggle made only liveable due to his protective gear.
Hello.
We are a family with a child with Lesch Nyhan Syndrome and we would like to contact you to see if you can help us by indicating a solution to avoid lip injuries.
Could you tell us how to contact you?
Thank you
Please join our Lesch Nyhan group on Facebook. So many of us can help support your family thru this ❤️. Let's connect thru there once you are a member :). facebook.com/groups/106039789454449/?ref=share
It seems like parents like this were made for children and to take care of these children I couldn't do it I can't believe how these people can do this it seems so second nature and very easy for them
Not easy, sad to say. It is extremely difficult every day but it is the life God has entrusted to us. We eventually got into the rhythm of life as we adapted. My friend knows of our hardship and she says their family would never make it if it were her, but one never knows until they've experienced it :)