Family plea for baby Sean who has rare and often fatal disease
When Sean Curtis was born in November 2020 he was diagnosed with a rare "one in a million" condition called Alexander's Disease

Family plea for baby Sean who has rare and often fatal disease

A FAMILY is pleading for the public’s help in fundraising to bring their 11-month old baby, who has an extremely rare and often fatal disease, to the United States for treatment to make him comfortable.

When Seán was born in November of 2020, his parents Jennifer Fahey and Brian Curtis never thought he would be diagnosed with a rare “one in a million” condition called Alexander’s Disease.

“We’re waking up blind everyday into this nightmare with absolutely no idea what’s happening or what symptoms to expect,” Seán’s mother Jennifer tells The Echo.

“This isn’t curable. He can’t recover from this, it’s fatal.

“But if we can get him to America to gain knowledge, we can hopefully catch the symptoms early and keep him comfortable.”

Ever since he was born, Seán has spent extensive periods of time in Temple Street Children’s Hospital trying to figure out what was causing his sickness.

Sean Curtis with parents Jennifer Fahey and Brian Curtis

First it was thought to be Colic, then reflux, then purple crying.

“His vomiting continued, so they ran more tests and we had an MRI done in April to investigate the white matter on his brain,” Jennifer, who is a Newcastle native, explains.

“We were thinking it could be metabolic, so we started to go down that route and then we got genetic testing done.

“Through that, we got the very shocking and devastating diagnoses that Seán has Alexander’s Disease.

“We’re not carriers of the gene, its a total freak of nature, one of his genes just copied wrong.

“Our hospital staff didn’t even know what it was, we only know of one other person in Ireland to have it.

“So we were told that he has months to five years to live, they can try their best to symptom manage and make him comfortable.”

Over the last few months, Seán’s symptoms have worsened with him experiencing seizures and dystonia on top of constipation, incessant vomiting and weight-loss.

Now, fast approaching his first birthday, Seán and his family are planning to fly to the United States to visit Dr Amy Waldman, a doctor with significant exposure and knowledge of the disease.

The family, who live in Raheny, are hoping that the treatment at the Children’s Hospital of Philadelphia (CHOP) can return Seán to a comfortable state – to help him smile again.

“He was just a very pleasant, placid little boy watching the madness in the house everyday – like me,” Jennifer says.

“I was told I could just sit there and watch the world go by when I was a baby, and that’s the way Seán was.

“We’re hoping to get that smile back.

“Everybody knows Seán for his smile, as soon as he’d walk into a room he’d just light it up with his smile.

“Since the seizures have started and the dystonia, were really struggling to get him comfortable and out of pain.

“It’s very hard watching your child crying and in pain, and not knowing what to do, it’s breaking our hearts.”

Over the last few weeks, Jennifer and

her partner Brian Curtis have launched a GoFundMe to cover the costs of flying the family to Philadelphia and for medical expenses associated with the treatment.

“It’s overwhelming, we really are in shock and disbelief with the amount of support.

“We set the GoFundMe up last Saturday hoping to get ahead of the costs and we’ve been blown away with how generous everyone has been.

“We are very private people, to set this up really took a lot of strength but we’re doing it for Seán.”

But the journey does not stop there, with the family planning to keep the fundraiser going to cover costs of ongoing treatment and research into the disease.

To donate, visit the family’s Go Fund Me page HERE. 

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