Welcome to the Lesch-Nyhan Support Website

This website has been designed so that any parent of a Lesch-Nyhan child or anyone wanting more specific information about this unusual and rare disorder, can benefit and learn from our experiences so far- our son Robbie is now 19 years old. 

First I would like to address parents of a newly diagnosed child.  I remember how my husband and I felt when our son Robbie was diagnosed.  Up until he was 2 1/2 years old, he had a diagnosis of cerebral palsy.  We felt this diagnosis was difficult enough-but when we got the Lesch-Nyhan diagnosis, we got our hands on all the possible literature about it.  All articles we found were very depressing and painted a very bleak picture for our son.  We have, in our case, proved those articles wrong because we refused to believe  what has proved to be outdated data.

We found out over time that:

1) These children can be of normal intelligence, they are not automatically mentally involved as believed.

2) Even though this disorder is very hard to deal with and can be very stressful for the family, our son has taught us so much about what it is like to persevere- in our eyes he is a hero and will always be, for as long as we have him.  In other words, he has been our teacher.

3) We have presented in his life options and choices, some have worked well, others have not; we suggest you never give up, fight for him , challenge him, while being realistic too. We hope the adaptations and ideas we have used for Robbie will work for your child.

We wish you the best with your son and hope this site helps as your child grows and has his own unique experiences.  Also know you can email anytime if you have any questions.  Please remember that all LNS kids are unique and may present with different problems- the following information is meant to hopefully lessen or shorten problems that may come up with your child.

LNS (Lesch-Nyhan syndrome) has affected our child in these ways:

Physically, Robbie is severely  limited, however he can use his arms and hands well enough to use and access his computer.  Mentally Robbie is of normal intelligence and is verbal, with a good vocabulary.  Unfortunately, recent psychological evaluations for IQ do not reflect his good mind since the disorder gets in the way of testing and it is so difficult to test any physically disabled child as limited as Robbie is, according to standard methods.

Please contact us at [email protected] if you have any questions or comment.