This is Charlie, he is 8 years old and has a condition called Lesch Nyhan Syndrome. We live in Peebles in the Scottish Borders. Charlie is the happiest cheekiest little man you will ever meet and he doesn't let anything get in his way. He is a true inspiration to us all.

He was only diagnosed with Lesch Nyhan Syndrome 3 years ago. It is a genetic condition which is degenerative and life limiting. This condition means Charlies suffers from dystonia (muscle spasms) which can be very painful and hypotonia (low muscle tone/floppiness). His condition also affects his kidneys and he requires at least 2 litres of water per day to help keep them working well. He is non verbal but fully understands everything going on around him. Charlie is unable to sit unaided or walk and requires a wheelchair full time. He has an NG tube and requires this due to his condition to get the large volume of water in as well as his milk. As parents we were heartbroken to learn about Charlie's diagnosis but we just need to keep trying to help him and give Charlie the best life going forward.

Before we had Charlie’s diagnosis we did lots of fundraising for Just4Children to provide the specialist therapy as we thought it would give him the best chance to sit and walk but sadly after we received his diagnosis we have realised now it is more for managing and helping him with his condition. Charlie absolutely loves going to Smile therapy in Canada and smiles throughout all sessions as well as working extremely hard.

Just4Children would like to raise money to help Charlie go to specialist therapies like Smile Therapy in Canada to help manage his condition. As well as use the money if we need to buy any equipment for Charlie as specialist equipment is extremely expensive.

If you can share, donate or do anything to help we would be extremely grateful.

Thank you

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