I am fundraising to help fund further research and for the foundation to continue to support families and carers of those with Nicolaides Baraitser Syndrome.

What is Nicolaides-Baraitser Syndrome

In 2021 I had my beautiful baby girl. She has been the light of our lives and makes everyone she sees smile! Since turning 1 last year she has had a tough time. Despite that she has continued to be the happiest little girl. Most people won’t know but in may this year we received the news that Gwen had an extremely rare genetic syndrome called Nicolaides Baraitser syndrome (NCBRS).

With only 270 worldwide confirmed cases we have had to rely on the NCBRS foundation to educate us on what this means for Gwen. NCBRS for Gwen means that she is tiny but mighty, has beautifully long eyelashes you would die for, the most infectious smile, thin fine hair, mild speech delay, Epilepsy, increased likelihood of having a learning disability. 

There is no way to treat NCBRS as it is part of who Gwen is, but there are many ways we can support her to be the best version of herself she can be.

 NCBRS was only formally defined in 2012 as a genetic syndrome. This means that there is so much that we don’t know about how it affects the people who live with it later in life. Donations will support further research and the foundation to continue helping all of our NCBRS families!