Hartlepool teen fighting rare disorder backs national Jeans for Genes Day

Ellie-Mae Morgan with her Daddy Richard Carter and Mum Samantha Morgan
Ellie-Mae Morgan with her Daddy Richard Carter and Mum Samantha Morgan

AN inspiring teenager who suffers from a life limiting genetic disorder for which there is no cure has given her backing to a national charity drive.

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.

But now she is helping to raise awareness of children’s genetic disorders with the UK children’s charity Genetic Disorders UK and their annual fundraising day, Jeans for Genes Day.

It takes place Friday, September 20 and invites everyone to wear their jeans to work or school in return for a donation.

Ellie has sadly rapidly deteriorated since she was diagnosed by Newcastle’s Centre for Life in March last year and she is now totally dependant on parents Sam Morgan and Richard Carter and cannot walk unaided.

The family has had support from the Huntington’s Disease Association which will receive a grant from Jeans for Genes Day to fund a weekend, which Sam and her family are looking forward to joining.

Sam said: “Ellie-Mae makes me feel humbled in how she copes.

“She is kind and her smile can light up a room. She is an inspiration.”

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.