1 in 17 people will live with a rare disease in their lifetime, but despite the numbers, it can be an incredibly isolating experience. We want you to be the star that illuminates this rare reality for Rare Disease day on 28th February.

Some of you may know my son Jenson was born with a rare disease that affects 1 in 5000 known as Hirschsprung’s disease.

Hirschsprung's disease is a condition that affects the large intestine (colon) and causes problems with passing stool. The condition is present at birth (congenital) as a result of missing nerve cells in the muscles of the baby's colon. 

We are so grateful for everyone who has supported Jenson along the way and for the fundraising that goes towards supporting finding better solutions to help support people who are affected by rare diseases. This research and development helps them to lead easier lives. 

Myself and my sister this year will be doing a sky dive to help raise awareness of rare diseases and to raise awareness of Hirschsprung’s disease. We were lucky we discovered Jensons condition early on in his life, left untreated and without surgery Jenson could of not been with us today and that was nearly the case having been sent home from the hospital without it being spotted. Luckily my gut instinct was right that something was wrong and finally 11 days later we were admitted into the Bristol Childrens Hospital where he received his life saving treatment. We will be forever grateful for those amazing members of staff at the Bristol Childrens hospital who saved Jensons life and who have supported us every step of the way. Jenson is now on a long term bowel management plan which is thanks to the research that people have dedicated towards rare diseases he is able to manage his condition day to day and lead a happier life.