THE parents of a brave youngster with a terminal illness will cherishing every moment as they celebrate new year together because they fear it could be her last.
Hartlepool teenager Ellie-Mae Morgan, 16, is one of only about 100 young people in the UK with Juvenile Huntington’s Disease.
Doctors originally gave her a life expectancy of between five and 10 years after she was diagnosed in March last year.
But the cruel disease which Ellie-Mae inherited from her biological dad has quickly escalated in recent months.
Huntington’s Disease damages nerve cells in the brain leading to a gradual loss of function of speech and movement.
Ellie-Mae recently spent four weeks in hospital after she suffered two frightening seizures at home when she stopped breathing.
Mum Sam Carter, said: “It was really scary. I thought we had lost her.
“It has really escalated, she is now into stage four and there are only four stages.
“Ellie can’t walk at all any more and has no mobility.
“We have had to enjoy this Christmas because we don’t know if there will be a next Christmas.
“We are just enjoying our time with her. Christmas is all about family time, but then it always has been.
“She is now the centre of our universe really.”
Sam and partner Richard Carter, 36, got married sooner than planned two weeks ago in a ceremony at Hardwick Hall, in Sedgefield, so that Ellie-Mae could be part of the memorable day.
Sam said: “We didn’t want wedding photos without Ellie on.”
Three weeks ago Ellie-Mae, who suffers muscle violent spasms, which stop her sleeping, celebrated her 16th birthday.
She enjoyed a trip around the town in a pink limo with family and friends and the family enjoyed a Christmas trip to Newcastle’s pantomime Jack and the Beanstalk courtesy of the Huntington’s Disease Association.
In the new year Ellie-Mae is looking forward to seeing her idols One Direction in concert.
“Underneath it all she is just a teenager who wants to do teenage things,” added Sam. “And she has still got that beautiful smile.”
Richard added: “She is a fighter. We try to make every day as comfortable for her as we can.”
Ellie-Mae has a permanent place open to her at the University Hospital of North Tees and the Butterwick Hospice should she need it.
But her favourite place is her bedroom at home where she watches films and is showered with love by her brothers and sisters Harry Morgan, 18, Olivia Morgan, 14, Richard Carter junior, 14, Rebecca Carter, 11, and Bailey Carter, eight.
Earlier this year supporters raised over £1,000 to buy Ellie-Mae her own hydrotherapy pool to help ease her muscle spasms.