herald

Saturday 3 December 2016

'Help us to improve our sick little boy's quality of life', plead devoted couple

Michael Sorohan with son AJ
Michael Sorohan with son AJ
Michael and wife Ewelina with AJ and baby daughter Roxanne

The parents of a little boy who has neurological and physical abnormalities are desperate to find a diagnosis that may give him some quality of life.

Alex James 'AJ' Sorohan, who will be four on December 28, needs round-the-clock care from his parents Michael (35) and Ewelina (33) at their home in Kells, Co Meath.

AJ appeared to be perfectly healthy when he was born full-term at the Rotunda Hospital, said Michael.

Blind

However, at three months it was suspected he had sight problems, and an ophthalmologist at Our Lady's Children's Hospital in Crumlin confirmed he was blind.

A subsequent scan revealed he has severe abnormalities of the frontal lobe of his brain. He also has epilepsy.

A neurologist then broke the news that he is severely mentally and physically disabled and that the prognosis is not positive.

Despite AJ spending much of his life in and out of hospital undergoing tests and scans, specialists are still no closer to finding out what caused his condition, nor are they sure if there is any treatment that can improve his quality of life.

"He's like a living doll," said Michael. "He can't do anything. He has zero quality of life."

Michael and Polish-born Ewelina spend their days looking after AJ, which requires giving him a cocktail of 11 separate medicines morning, noon and night via a tube inserted into his stomach to control his digestion, sleep and seizures.

Because he is tensed up all the time, they also have to massage and give him daily stretching exercises.

"At bad times AJ goes through days of constant vomiting and then days of constant crying and irritability," said Michael.

"We never quite know what the next day has in store for us.

"This is our life now. This is our whole world. We wake up and this is it, but he's our absolute pride and joy and we love him dearly."

Magic

The couple are hoping to raise €50,000 for further diagnostic tests in the US or Canada that may shed some light on AJ's condition and help them better manage it.

"We don't think there's ever going to be a magic pill," said Michael.

"He'll never function as a normal child, but we're hoping there may just be something that might improve his quality of life."

Michael and Ewelina have set up an account on the fundraising website gofundme.com.

So far, donors have contributed €1,300 for the 'Get AJ To The USA' campaign.

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