Lesch-Nyhan Disease support group

Hi , my name is Tara , my son Riley is 17 . We saw a new doctor today ,he hinted that Riley is at the age of regression.I would like to know if this really happens .Our genetisis also sad around 17-18 this would happen .Any info would help . Thank You , Tara Finn

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Hi Tara
We were given similar information about regression . But Bearing in mind that everyone is an individual, our son has continued to mature, develop and learn - he is now 23. He is working part time for a disabled children advocacy group doing training. So much more than we would ever have imagined him doing.
Anything is possible!

Thank you for the encouragement . We have a lot going on . Rileys hip is starting to rub his pelvic bone , and the scoliosis is getting to the point of deforming his ribs .The concern is eventually it will crush his organs if not repaired and it is a major surgery .The doctor said one of the worst . Thank You Tara Finn

Hi Tara

Callum is 18½. He is perhaps not as mature as many of his able bodied peers but he continues to make progress. His group of drinking buddies are in their early twenties and he has been completely accepted into the group. In terms of his education, I think he is actually doing better in this area because his learning is focused because he wants to learn how to run his own business. He has a business idea (off road quad biking for disabled people) which he is working towards when he leaves college.




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