Julian needs Wolf-Hirschhorn related surgery

Wolf-Hirschhorn Syndrome is a disorder where part of chromosome 4 is missing. It is a genetic condition affecting the face, heart, brain and height. My young son Julian has this condition.

Unfortunately, this condition means that visits to emergency and surgery are a necessary part of normal life. Julian has endured hospital visits for various infections and multiple surgeries to remove teeth that were either rotting or were causing issues with his jaw and mouth. Now that he is 10, this has led to a need for yet more surgery but this time more complex, invasive and requiring significant post-operation follow-up.

I have been told that it is critical that Julian's surgery is completed within the next 6 months, otherwise, we will lose the "window of opportunity" and any later surgery will be extremely risky and even more complex than now. For this surgery, Julian will require many of his teeth to be removed and his jaw "realigned" to remove his excessive "overjet" and "traumatic deepbite". The surgery will not only require significant teeth extraction, but the addition of plates to realign his jaw, which will need to be removed in 12 months and replaced with wire braces. We will then move into significant follow-up procedures.

I have never asked for help with Julian's care before but I don't see any other option this time. I simply cannot afford the cost of this surgery and will very gratefully accept anything you can spare.

Thank you so much for reading our story xx