herald

Monday 18 December 2017

Brave Isabella left blind in battle with rare brain disease

THIS brave Dublin girl is the only one in Ireland with a rare genetic disease that has caused blindness and mental development issues.

Isabella Villena is 16 months old and has Aicardi Syndrome -- just one of around 1,000 worldwide with the devastating condition.

Doctors discovered fluid on her brain shortly after she was born and broke the news to her parents Samantha and Francisco Villena, who had never heard of the condition.

Isabella was born without a vital piece of her brain and began to have seizures shortly after birth.

But this was just the beginning.

The genetic brain disorder, that only affects girls, means that she won't develop the skills of crawling or eating like other children. She is blind and can only recognise light and dark and has regular violent seizures.

Isabella, from Dundrum, has to be fed through a tube directly into her stomach.

Ultimately it is feared that Isabella's life will be cut short because of the condition.

However, her uncle, Tom Hogan, has pledged to establish a charity to help her long-term care.

"Isabella suffers seizures, she is blind and fed through a tube," he told the Herald. "Part of the brain doesn't form with this condition.

"But having said that, you wouldn't know there is a thing wrong from the way she is -- she's incredible.

"Children with the condition are called the Aicardi Sisters -- because it only really affects little girls. There are a couple of little boys, but that is even rarer again," he added.

"It varies in severity. Isabella is quite severe -- she legally blind and in terms of how much she has developed mentally, we don't know how far she is going to go."

And he said that her brother Alex (4) is hugely supportive of his baby sister.

"Considering he is just a child and his age, to understand about his sister has been very difficult," Tom said.

With the help of some footballing friends, Tom has managed to raise €10,000 to help with her care and kit out her home with simple facilities.

"I'm part of the United Churches Football League and run the forum," he said. "We meet up, have a game and a bitch about football. I explained to the lads about Isabella. I have never seen 40 men rally around something so well. In one day -- one cold, horrible day in December -- we raised €10,000."

The Football for Izzy organisation is holding another fundraiser on July 7 at 2pm in Tolka Park.

Further information and online donations can be made at http://footballforizzy.ucflforum.com/

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