Tristan has a rare genetic condition called Wolf-Hirschhorn Syndrome (WHS). He has severe developmental delay and faces many challenges. Growth Hormone and physiotherapy help a great deal.
Tristan was born with a rare genetic condition called Wolf-Hirschhorn Syndrome. This means he has severe developmental delay 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 cognition. Tristan is seen by Great Ormond Street Hospital who deemed him a good candidate. Tristan has had 4 operations at Great Ormond Street.
Unfortunately, growth hormone for someone with WHS 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 8 years old.
Since starting growth hormone therapy Tristan has put on significant weight and muscle, and his cognition has improved. He has a walker which we and his school regularly use to help him take steps and support his weight. He is getting ever stronger meaning thankfully things continue to go in the right direction.
The NHS provides 30 minutes of physiotherapy per month which is not enough to effect a change. We take Tristan for private physiotherapy several weeks per year which helps him enormously with posture, balance and stretching, and with the goal to help him learn to stand independently and take secure steps.
Tristan is a very happy and loving boy and brings us unbelievable amounts of joy. His amazing big sister dotes on him and involves him whenever possible. He and his little sister are still trying to figure each other out.
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 who have donated or fundraised for Just4Children to support Tristan. Every penny will go towards vital medication and physiotherapy.
