Treatment for Seán’s 1 in a million disease

Hi, we are Jennifer & Brian, in November 2020 we were gifted with the most beautiful baby boy. We called him Seán Oisín Curtis.

From birth poor Seán has had a difficult road and we've been in and out of Temple Street Children’s Hospital trying to help him thrive, with the help of a fantastic medical team.

Unfortunately, we recently received a shocking and devastating diagnosis. Seán has been diagnosed as having ‘Alexander's Disease’. This is an extremely rare disease which is fatal.

1 in a million people develop this disease making it extremely rare and difficult to treat.

There is no cure for ‘Alexander Disease’, nor is there a standard course of treatment.

We do know that life expectancy is short.

We have found a doctor in America with significant exposure and knowledge of this disease, and spoken to a few families across the world affected by this awful disease, who have visited this doctor with their children and highly recommend to get symptoms under control. The doctor is called Dr Amy Waldman and she works in the Children's Hospital of Philadelphia (CHOP). We have already reached out to her for help.

We want to bring Seán to America to receive treatment from Dr Waldman so as to make Seán as comfortable as we possibly can. To live the best little life he can.

We are waiting on appointment confirmations and a more definitive total cost, after which we will update this page to match.

We are reaching out for your help so we can get Seán over to America to get him services / treatment for this extremely rare disease.

Anyone who is lucky to have met Seán will agree, he is 1 in a million, a beautiful pure innocent baby boy who does not deserve this cruel outcome in life. We want to do everything we can to help him enjoy the time he has left.

Thank you x

Jennifer & Brian