The brave eight-year-old from Cradien, outside Enniskillen, passed away on the morning of March 9th from a rare progressive neurological condition known as Hypomyelination with atrophy of the basal ganglia and cerebellum (H-ABC) Syndrome, which meant she was unable to walk or speak. A month before she died, Ellie’s family were told that her prognosis was terminal after a long battle with the illness, which affects just one in 318 million people.

 

Since then, Ellie’s parents Ciara and Billy and their fundraising team have continued to fundraise for research into the condition through various events including the Enniskillen 10k, the Liverpool Half Marathon and the London Marathon.

 

Yesterday (Tuesday) on what would have been Ellie’s ninth birthday, two of her uncles and two friends (and Billy driving the support vehicle) left from Cross Cemetery to take on a 290 mile cycle to Hook Head. They are fundraising for a new initiative by her family and friends, ‘Ellie’s Retreat’.

 

Ciara and Billy recently returned from a short break at Alice’s Escapes in Cumbria, a charity which also offers respite breaks for families and where the idea for ‘Ellie’s Retreat’ was born to help others in her name. Based at Castle Archdale, it will offer free respite for those who have lost a child where they can escape and have some anonymity, space and time together. 

 

Ciara said this week that she hopes this will be another step forward in the healing process: “There are no words to explain the grief after the death of your child whether expected or not. The pain and heartache felt are immense. Numbness and severe anxiety become a part of everyday life. There is a real fear of going outside the door and meeting people having no explanation for these feelings.

 

“We will still fundraise for H-ABC Research in the future but ‘Ellie’s Retreat’ will be our main focus”.

 

Team Ellie are now fundraising to raise £20,000 for the purchase a static mobile after the project was officially launched at the weekend. More events are planned including a

 

Charity Family Bingo at Zodiac Bingo in Enniskillen at 4pm on Sunday, October 9th. 

 

It is hoped that the first family will be welcomed to the caravan next April, which the family say will be “fit for a princess”.

 

Ciara added: “Ellie’s Retreat will be a safe haven for families like us, offering week or weekend breaks. It will hopefully be a step forward in the healing process. The mobile will be equipped with all the family’s needs and a small welcome pack of essential groceries will be provided on arrival. We also hope to deck the outside and provide a BBQ with a seating area.”