FAMILY and friends of a young Rathfriland girl suffering from a terminal genetic condition will run the Belfast Marathon to raise funds for research into the rare disorder.
Seventeen-month-old Lucy Parke from Ballyward was diagnosed with Hutchinson-Gilford Progeria Syndrome - for which there is no cure - last year and is the only person in Ireland living with the premature ageing condition.
Brave little Lucy’s parents David and Stephanie said she is a joy in their lives, and is adjusting well to her six-week-old twin siblings Jake and Jenny.
There are currently only 78 known cases of Progeria - which causes Lucy’s body to age eight times faster than normal - in the world, and now family and friends of the Parke family have decided to don their running shoes to raise funds for the Progeria Research Foundation.
The genetic condition - which is not inherited - means that although Lucy is 17 months old she weighs just 13lbs and wears clothes for younger children. The toddler also faces arthritic and heart problems and already suffers from growth failure, hair loss and loss of body fat.
Lucy’s parents said they are delighted to have such support from friends and family in a bid to raise funds for research nto this devastating and rare condition.
Mum Stephanie said her eldest daughter is a happy little girl.
“Lucy is a happy child and delights in nursing her new baby twins, Jake and Jenny who were born just 6 weeks ago,” said Stephanie. “Lucy has normal mental ability and should walk and move around like other children. She does look different to other children with growth failure and loss of hair and body fat.”
The Progeria Research Foundation is the only non-profit organisation solely dedicated to finding treatments and a cure for Progeria and its ageing-related disorders.
Anyone who would like to make a donation can do so online at www.progeriaresearch.org or by calling David or Stephanie on 02840650285. Locals can also contact any of the participants to make a donation.