Amelia and family fronting Jack and Jill Christmas campaign

THE family of a young girl with a rare neurodegenerative condition are fronting this year’s Christmas campaign for children’s charity The Jack and Jill Foundation.

Lucan family Deborah Greene and Wayne Somers, and their children Calvin, 11, and Amelia, five, feature in the campaign, with Deborah remarking that she would likely be ‘housebound’ without the support provided by a nurse from the charity to assist with Amelia’s care.

Amelia is one of only four children globally who’ve been diagnosed with a rare condition called CLCN6, which was diagnosed several years after she began to develop symptoms.

The little girl’s mother, Deborah, told The Echo: “Amelia was doing well until she was one.

“We had her check-up with the health nurse and she noticed that her head was small and her muscle tone was weak.

“When she was one-and-a-half she was coming in as an eight month old in terms of her development, and she started regressing.

Amelia with her brother Calvin

“She had all her ‘baby words’ until she was two, which was the last time that she spoke.

“She used to wave and blow kisses, and that stopped too.”

Amelia also developed epilepsy, which has seen her experience at least 15 seizures a day since May 2019 – and last June her condition worsened to the extent that she was having up to 100 seizures a day.

While the amount of seizures Amelia experiences has now reduced as result of new medication, Deborah said her daughter seems to become “immune” to her seizure medication so it has to be changed every few months.

However, Amelia is still an excitable and social little girl, who enjoys being around others and is doted on by her brother Calvin.

“She’s very sociable,” explained Deborah. “She loves being out in her buggy and meeting new people.

“She gets very excited. Even though she hasn’t laughed since January gone, and I think that’s part of her regression, she still smiles a lot.

“And Calvin is brilliant with her. He’s quite a soft child, and he loves cuddles. He sits up with Amelia, and he’s great with her epilepsy and knows what to do when she has seizures.”

Amelia requires 24/7 care, and Deborah said that because her daughter’s condition is so rare, they’re unsure of her prognosis and have to “take each day as it comes”.

Amelia receives 20 hours of care a month from a nurse from The Jack and Jill Foundation, which has been invaluable for her family.

“I’d probably be housebound without it,” said Deborah.

“My family do help, but because Amelia’s so complex it’s hard to show other people how to care for her, but the nurse is trained and knows what to do.

“There are things that Calvin wishes he could do with me, like go to the cinema or the zoo, and because of Jack and Jill we can do those things.”

The family is fronting the charity’s Home for Christmas campaign, where they are encouraging people to support The Jack and Jill Foundation by purchasing from its Christmas Collection or by donating directly to the charity on its website HERE. 

The money raised will fund the charity’s in-home nursing care and respite for children up to the age of six with severe to profound neurodevelopmental delay.

It currently supports 402 children with highly complex medical needs with at-home care.