Tristan has a rare genetic condition called Wolf-Hirschhorn Syndrome(WHS). He has severe developmental delay and faces many challenges daily. Growth Hormone and physiotherapy will help immeasurably.
Tristan sees many specialists under the NHS but not all treatment is covered. The NHS provides 30 minutes of physiotherapy per month which is not enough to effect a change. We regularly take Tristan for private physiotherapy. He is about to start his first 3 week programme.
Tristan is nearly 3 and has put on just a few hundred grams in the past year and weighs just under 9KG (20 lbs). He is due to start growth hormone therapy. There are several children with WHS who have had this therapy and every one of them has benefited enormously. It not only helps with weight gain but also increases muscle tone and improves cognitive ability. Unfortunately, because no clinical study exists this will not be funded by the NHS and the cost is upwards of £10,000 per treatment. Tristan will require several treatments.
He is a very happy and loving little boy and brings us unbelievable amounts of joy. His sister dotes on him and always involves him and says “what about Tristan” which melts our hearts. We will do all in our power to give him his best possible life. We will celebrate his milestones when he reaches them, and will try any and all treatments that might help.
Thank you so much for donating. Every penny will go towards vital treatment, therapy, equipment or sensory items that will help Tristan.
Please can you share on Facebook or other social media to help raise awareness, plus we never know who might know of another treatment, facility or type of research that we may not yet have come across.
Sincerely and with love
Andy and Domi