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 was born with a rare genetic condition called Wolf-Hirschhorn Syndrome caused by a deletion on the 4th chromosome. This means he has severe developmental delay both physically and mentally.
We found out when Tristan was young that growth hormone therapy has significantly helped those with Wolf-Hirschhorn Syndrome (who were good candidates) with weight gain, increased muscle tone and improved cognitive ability. Tristan is seen by Great Ormond Street Hospital who deemed him a good candidate.
Unfortunately, growth hormone for someone with Wolf-Hirschhorn Syndrome is not funded by the NHS in England(yet in Scotland the NHS does pay for growth hormone for those with WHS who are good candidates). The treatment costs thousands of pounds every year and Tristan will require it into his teens. He is currently 6 years old.
Since starting growth hormone therapy Tristan has put on significant weight and muscle, and his cognition has dramatically improved. He can stand for 30 or 40 minutes and has a walker which we regularly use to try to encourage him to take steps and support his weight.
He remains under the care of Great Ormond Street but funding for the growth hormone will remain with us. The NHS have a policy of not taking over funding if it was started privately.
The NHS provides 30 minutes of physiotherapy per month, this is not enough to effect a change. We take Tristan for private physiotherapy which helps him enormously with posture, balance and stretching, and with the goal to help him learn to walk.
Tristan is a very happy and loving 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 to all those who have donated or fundraised for Tristan. Every penny will go towards vital treatment, therapy, equipment or sensory items that will help Tristan.
We appreciate family and friends sharing on Facebook or other social media to help raise awareness, plus we never know who might know of another treatment or type of research that we may not yet have come across.
Sincerely and with love
Andy and Domi
