Hi, we are raising money for the YWHAG Research Foundation. (YWHAG foundation.org) A charity set up in the US aiming to raise funds to support research and develop treatments to help children affected by the YWHAG gene mutation. Children like our Son, Noah.

The genetic testing that uncovered the YWHAG gene mutation as a cause for Developmental and Epileptic Encephalopathy 56 has only been in place since 2017 and so there are only around 24 cases (globally) at present. Noah was the 11th child in the world to be diagnosed in September 2020. Because of low numbers no research into cures is being done in the UK so it's up to the families affected to raise the funds needed. There is a company in the US that is ready to look at a drug repurposing trial which could help our children and those diagnosed in future.

Life for children with this condition is incredibly hard. Noah had his first prolonged epileptic seizure at 14ths old. He has had 5 seizures in total with 4 resulting in him needing to be put on a ventilator in ICU. He takes multiple medications, has global developmental delay, is non-verbal and has mobility problems. He likely has ADHD and potentially ASD. He needs care pretty much 24 hours a day but despite all of his challenges is a beautiful, happy little boy who always has a smile for everyone.

As things stand we dont know what his future holds but want to do all we can to give him and all the children like him the best possible chance to have one.

Please support this charity if you can. It would mean the world to us and we would be forever grateful. All funds collected through this fundraiser will be transferred directly to the YWHAG Research Foundation.