Baby girl Ellsa suffers 10 seizures a day... but there's a ray of hope in America
Published 25/07/2014 | 11:15
The parents of a little girl born with severe epilepsy have spoken of their determination to bring her to America to get her specialist treatment that could transform her life.
Ellsa Alexander-Adams was born on April 7 this year, but within seven weeks she began suffering uncontrollable seizures.
Her parents Aaron and Leanne go through the agony of watching her experiencing more than 10 fits a day.
Both have remained at her bedside at the Royal Victoria Hospital in Belfast during her treatment.
Although Aaron and Leanne have been told she has epilepsy, doctors have been unable to give a full diagnosis.
They now face making the journey to Manchester to see a specialist. But the couple believe that doctors in Boston could provide Ellsa with the expert help they need.
They are now trying to raise the funds to make the trip.
A website has been set up blogging the couple's appeal and has sparked a huge response from the public.
"She was everything we had expected, dreamt about and hoped for; she weighed 8lbs 5oz and came out kicking and screaming, much to our delight," Aaron said.
"The first seven weeks were fantastic, we felt we were complete. But then the 'episodes' started. We didn't have a clue what they were. We took her to the hospital and Ellsa was kept overnight to observe her.
"No blood tests were taken and we were told it was a milk allergy."
Aaron (29) said they were assured there was nothing seriously wrong with her.
But Ellsa, who was still having fits, was examined again two weeks later as an outpatient.
Following blood tests they were told she had been suffering from bad reflux. But after Aaron filmed Ellsa having a seizure on his mobile phone they rushed her to RVH. "We showed the video to the nurses in A&E and instantly she was admitted to the ward," he said.
The 15-week-old has now had blood tests, lumber punctures, scans and is on medication, but is still experiencing the seizures.
The couple believe she has an early onset of a condition called infantile spasms, or West syndrome. "We are being referred to Manchester Children's Hospital for a PET scan and other things to try to stop Ellsa deteriorating. The worst thing is she is being given all this medication but she is actually getting worse," Aaron said.
"The people in the NHS are great but we have to wait. Resources are stretched here. After talking to other people who have gone through similar ordeals we just feel we need to go to Boston.
"We are dejected, exhausted and close to breaking. We spend the day counting our daughter's seizures.
"We want to do whatever we can to save what is left of our daughter before she gets worse.
"I know it seems a lot to ask but the only thing we can think of is to bring her to America for a specialised, tailored approach to her needs and epilepsy."
If you would like to help visit www.hope4ellsa.co.uk
Ellsa Alexander-Adams was born on April 7. Within seven weeks she began suffering uncontrollable seizures. She has been referred by the Royal Victoria Hospital to a Manchester hospital for treatment. But her parents believe that the Epilepsy Centre at Boston Children's Hospital is the ideal place for treatment.
They hope to raise more than $250,000.