A HEARTBROKEN family has spoken of their devastation at watching their teenage daughter fade away before their eyes.
Bubbly Ellie Mae Morgan, 14, is one of only about 100 young people in the UK who has a condition called Juvenile Huntingdon’s Disease and tragically has a life expectancy of between five and 10 years.
Mum Sam Morgan said: “There is no cure. As a mother you are meant to protect your children and there’s nothing I can do to save my child.”
Ellie inherited the rogue gene from her biological dad and grandfather who have also got the disease but it did not affect them until much later in life.
Her brother Harry, 17, and Olivia, 13, also have a 50-50 chance of the disease developing in them at any time.
Ellie has sadly rapidly deteriorated since she was diagnosed by Newcastle’s Centre for Life in March last year.
She is now totally dependant on parents Sam Morgan and Richard Carter and cannot walk unaided.
Sam, 46, said: “People who met Ellie five years ago can’t believe the deterioration in her.
“She doesn’t understand what’s happening to her, she just accepts what’s going on and never moans. She has got such a lovely nature.
“I’m just watching her slowly slip away. It’s the most awful thing ever.”
Richard, 36, added: “We just take things as they come. I try and blank out what the future holds.”
Ellie’s speech has also been affected and she has lost a lot of weight as her body uses up much more calories than before.
She is also at risk of choking because of the effect the disease has had on her tongue and throat muscles.
Sam, of the Elwick Road area of town, said she suspected Huntingdon’s Disease when Ellie started behaving strangely and her grades started slipping at school.
But she says she struggled to convince doctors.
“I was told children don’t get Huntingdon’s,” she said.
Sam learned Huntingdon’s was in her family when she was pregnant with daughter Olivia.
It caused the breakdown of her marriage to husband Jonathan, who lives in the Gloucester area.
“Ellie got it at such a young age. There are only between 80 to 100 people in the whole of England and Wales with Juvenile Huntingdon’s Disease.”
Sam and Richard have teamed up with the charity Jeans for Genes to tell Ellie’s story and help raise awareness about the little-known condition.
Along with Pathways to Independence in Hartlepool who help to care for Ellie, they are trying to raise £3,000 to buy a home hydrotherapy pool.
It is to help with violent muscle spasms she suffers from and make her remaining years as comfortable as possible.
Ellie, who attends High Tunstall College of Science, currently has hydrotherapy treatment three times a week through Hartlepool Special Needs Support Group.
Sam added: “It’s quality of life now we want to give Ellie now as we can’t give her quantity.”
Earlier this year the Make a Wish Foundation send Ellie and the whole family to Disney World in Florida.
She also got to met X Factor winner Joe McElderry when he performed at Billingham Forum recently and this week she is going to see boyband One Direction.