An appeal is underway to raise urgent funds for specialist treatment for a beloved baby boy, Seán Oisín Curtis.
Seán is almost one year old. His parents Jennifer and Brian recently received a shocking and devastating diagnosis that he has Alexander Disease.
Alexander disease is a rare genetic disorder that progressively damages the nervous system. There is no known cure, but treatment is available to manage symptoms and improve quality of life.
His parents, who live in Dublin, aim to raise €50,000 to bring him to the Children’s Hospital of Philadelphia for treatment to get his symptoms under control.
“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,” said Jennifer in a GoFundMe appeal.
Before starting her family, Jennifer lived in Donegal for 5 years and worked in Pramerica in Letterkenny. She was well known for playing the flute in The Reel Inn Donegal Town. She has a big circle of friends in Donegal.
“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,” she said.