Wolf-Hirschhorn syndrome is an extremely rare chromosomal disorder caused by a partial deletion of chromosome 4 during development. Symptoms can include wide-set eyes, a broad nose, a small head, mental and growth deficiency, heart defects, and seizures. The amount of genetic material deleted varies case by case so symptoms can range from very mild to severe. You can find out more about the syndrome here.
Since 2009 Daytrippers has been a proud supporter of The Wolf-Hirschhorn Syndrome Trust, the UK’s only charity solely dedicated to raising awareness of the condition and providing information, education and support to those affected by it. One of the ways they do this is by holding an annual conference at various locations in the UK to bring together families and professionals, promoting understanding and research.
Daytrippers fundraiser Hazel Cooper has attended many of the Trust’s conferences. She shared with us her thoughts about why these events are so important for those affected by the condition:
“My younger sister suffers from Wolf-Hirschhorn syndrome, a rare genetic condition that currently affects around 150 in the UK.
“The Wolf-Hirschhorn Syndrome Trust hold an annual meeting for children affected and their families. It’s a wonderful weekend where you get to catch up with old friends and also meet families with new diagnoses to offer information and support; with such a rare condition, having that support network there is essential.
“The weekend gives people a chance to learn more about the condition, breakthroughs in treatment and research, and find out about the best available support for the children and families. More importantly it gives everyone a chance to have some fun and unwind; there are lots of activities and entertainment for the young ones and parents can relax knowing their kids are in safe hands. This year Daytrippers generously funded ten pin bowling and a disco. Both were absolutely brilliant and it was wonderful to see everyone having such a good time – many people agreed the disco was the highlight of the weekend!
“Daytrippers has been a supporter of The Wolf-Hirschhorn Syndrome Trust’s annual meeting for a number of years – we are so thankful to them for their support and involvement in such an important event.”
To learn more about the work of the Wolf-Hirschhorn Syndrome Trust please visit their website.