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Tuesday 31 May 2016

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Charity of public in giving to baby Ellsa who suffers 15 seizures a day leaves parents overwhelmed

By Victoria O'Hara

Published 11/08/2014

Ellsa Alexander-Adams
Ellsa Alexander-Adams
Ellsa with her parents Aaron and Leanne

The parents of a baby girl born with severe epilepsy have spoken of being "overwhelmed" by public support to help bring her to America for specialist treatment.

Ellsa Alexander-Adams has spent the last three months of her life in hospital after starting to suffer uncontrollable seizures when she was just seven weeks old.

As reported in the Belfast Telegraph last month, her parents Aaron and Leanne, who go through the "nightmare" of watching her experiencing between 10 and 15 fits a day, launched a campaign to help send their baby girl to America.

After spending more than half her life in a hospital ward, both parents remain at her bedside at the Royal Victoria Hospital in Belfast.

Ellsa, who is now 18 weeks old, has undergone MRI scans and is on medication. The baby is being referred to Manchester for a scan but the couple from Bangor believe specialist treatment in America would be quicker and would help stop any further damage to her health.

Her parents believe that the Epilepsy Centre at Boston Children's Hospital in America is the ideal place for treatment.

In a bid to raise the funds, they set up a dedicated website which also features daily diary updates on Ellsa.

They have set a target of raising $250,000.

So far more than £4,000 has been raised within a few months.

The couple have said they have been "overwhelmed" by the generosity of the Northern Ireland public within such a short period of time.

And members of the public have been also donating to a dedicated website

A charity football match has been arranged to raise funds for the appeal on August 17 in Bangor.

"We never expected to have anywhere near as much support, kind words, help and donations as we have within such a short time," Aaron said.

"We are very grateful that good people get behind a cause, and we are truly humbled by you all."

But Aaron (29) explained little Ellsa's condition is unchanged and she is not improving.

"She isn't fixing (her eyes) or following, no social smiles and she doesn't hold her head," he said. "When you are watching her have continual seizures, it is just so hard when all you can think is how we should be enjoying her and this period of her life.

"All Leanne has done is cry, I wish I could fix Ellsa, as parents we are so helpless."

Aaron said they are both taking "each day as it comes".

"That is what we are doing but when you watch your baby have over 10 seizures – sometimes five seizures before 10am – you just want to do something to save her," he said. "We can't thank people enough for their help so far, but we are determined to carry on and get her to Boston."

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Story so far

Ellsa Alexander-Adams was born on April 7. Within seven weeks she began suffering uncontrollable seizures.

Her parents Aaron and Leanne from Bangor, Co Down go through the agony of watching her experiencing more than 10 fits a day.

An appeal has been set up through a dedicated website.

They hope to raise over $250,000 and are appealing for the public to help.

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