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‘Our beautiful baby Seán is one in a million. We’ll do everything we can to help him enjoy the time he has left’

Parents of boy born with rare Alexander Disease fundraising for specialist treatment in the US

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Seán Oisín Curtis, from Raheny, who has been diagnosed with Alexander Disease

Seán Oisín Curtis, from Raheny, who has been diagnosed with Alexander Disease

Seán's parents plan to being him to the US for specialist treatment

Seán's parents plan to being him to the US for specialist treatment

Seán's mum Jennifer hopes 'to see his beautiful smile again' if painful symptoms can be brought under control

Seán's mum Jennifer hopes 'to see his beautiful smile again' if painful symptoms can be brought under control

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Seán Oisín Curtis, from Raheny, who has been diagnosed with Alexander Disease

The parents of a baby boy diagnosed with an extremely rare neurological condition are hoping that specialist treatment in the US will help improve his quality of life.

Seán Oisín Curtis, from Raheny, struggled to thrive since his birth last November and has been in and out of Temple Street Children’s Hospital.

His parents, Jennifer Fahey and Brian Curtis, recently received the devastating news that their beautiful baby boy had been diagnosed with Alexander Disease, a rare and fatal condition, affecting one in every million.

While there is no cure or standard course of treatment available, Seán’s parents are determined to improve their son’s life with the help of a US-based doctor, Amy Waldman, who is considered one of the leading experts on Alexander Disease.

This will involve treatment at the Children’s Hospital of Philadelphia, which the couple hope will help bring his symptoms under control.

While they are aware that life expectancy can be short for those diagnosed with the condition, their ambition is to make Seán, the youngest of four children, as comfortable as possible.

The final cost of the treatment plan in the US has not yet been determined, but almost €50,000 has been raised to date for Seán through a fundraising appeal.

They will travel to Philadelphia for an initial consultation in early November, with a second visit planned before Christmas for further tests and treatment. For Seán’s parents, the trip can’t come fast enough.

“By nature, he is a very placid, happy child and is always smiling,” Jennifer told Independent.ie.

“However, since the start of his seizures and progression of his symptoms, his smiles have stopped and he is constantly in pain. I hope we can see his beautiful smile again.”

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Jennifer explained that Seán’s symptoms include persistent vomiting and seizures, which are currently under control.

He also suffers from dystonia, a stiffening of the muscles that causes him a lot of pain, as well as digestive issues, resulting in him being fed through a tube.

As not much is known about Alexander Disease in Ireland, Jennifer hopes to learn more about the condition while in the US so she can identify any new symptoms that Seán may develop.

“If we know what’s coming next, hopefully we – and his medical team – can respond quicker and get him out of pain as new symptoms arise,” she said.

“We also hope to open a communication channel between the doctors in America and his doctors here.

“Anyone who is lucky to have met Seán will agree he is one 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. We want Seán to live the best little life he can.”

Donations can be made to Seán’s fundraising page on https://gofund.me/31f656db


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