Sunday 24 September 2017

Stem cell treatment offers family hope for young Evan

Olivia Kelleher

THE parents of Evan O'Dwyer simply dream of hearing him speak for the first time.

The nine-year-old has a rare neurological disorder which led to the failure of the left side of his brain to develop.

Neuron Migrational Disorder in turn led to epilepsy and autism. He had 208 seizures in the first 24 hours of his life and cannot speak or feed himself.

But now Evan has travelled to Germany with his mother for radical stem cell treatment which they hope will transform the quality of his life.

His mother Deirdre has fundraised for the past year in order to pay for treatment at the Excel Centre in Dusseldorf.

The procedure will see bone marrow taken from his hip cultivated for stem cells. The neurosurgeon will then drill a small hole in his skull and insert the stem cells.

"We are really hoping for speech. It would be great for him to be able to communicate through speech," said Mrs O'Dwyer last night.

"You are bound to have last minute doubts but I really feel I am doing the right thing for Evan. If I won the Lotto in the morning I would bring him to a specialist in New York who has done extraordinary things to help children speak."

Evan, from the Commons Road in Cork, is expected to be in Germany for two weeks. His parents Deirdre and Al have raised in the region of €38,000 for his medical costs.

Expenses

However, his expenses will be ongoing and he will need treatment for many years to come. Speaking from Germany yesterday his mother said the flight to Dusseldorf went well and Evan did not have any seizures during travel.

"I was so worried he would get sick. This trip is a year in the planning and I was anxious that something would go wrong. I am meeting the neurosurgeon to iron out some last-minute doubts. They have a new diagnostic centre and they seem so far above us when it comes to health."

Evan already spent the first two years of his life in and out of hospital with grand mal seizures. He was also diagnosed as a coeliac.

When he was a week old his parents were told to baptise him as he was deteriorating too fast.

Mrs O'Dwyer said friends and family had been incredible in helping to raise funds but she admitted that it was a difficult time to raise cash for children like Evan.

"It is very tough. I brought him to Texas for treatment and it cost €25,000. We are paying everything out of our own pocket and Evan's medical expenses are between €400 and €600 a month.

"People are offering to do sky dives and we have a single recorded for Evan but it is difficult to keep the fundraising high profile.

"Roy Keane came out to us and he was a real gent, so that helped. I just want to do my best for Evan."

Funds can be donated for Evan's ongoing care via Permanent TSB in Patrick Street, Cork. Sort Code: 99-07-03 and A/C 15259903.

The fund is run by independent trustees.

Irish Independent

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