The ageing disease which claimed the life of eight-year-old Lucy Parke on New Year’s Day is a very rare and fatal condition with no known cure.
The Progeria Research Foundation (PRF), which is attempting to find a cure for progeria, paid tribute to the way in which the little girl from Ballyward in Co Down and her family helped raise the profile of the illness.
The News Letter spoke to PRF executive director Meryl Fink in Boston, Massachusetts yesterday to find out more about the extremely rare condition which affects less than 400 young people throughout the world.
She said: “Progeria is a fatal rapid ageing disease that afflicts children. They die of either heart attacks or strokes at an average age of 14 – the same heart attacks and strokes that afflict the normal ageing population.
“You’ll see children with progeria experience a loss of hair, advanced cardiovascular disease and contractures of joints – these are some of the symptoms that track the typical ageing process. The rest of their development tracks their age in terms of their likes, dislikes and their personalities.”
In 2003 research funded by PRF found the cause of the disease to be a random genetic mutation. “While we know what causes it we do not know why it happens,” said Ms Fink.
The condition was first decribed in the late 1800s.
“We have known of its existence for a little more than 100 years, though until PRF was founded in 1999 nothing was being done to treat it or find a cure,” said the PRF director.
She added: “We were aware of Lucy and her family at PRF though I never had the opportunity to meet Lucy personally. I’m told she was able to light up a room and did a lot to raise the profile of the condition. I have met a number of other children with progeria and there is a special light of happiness that comes through them.
“We send our thoughts and prayers to Lucy’s family. Children like Lucy are the inspiration to carry on our research and ultimately find a cure.”
Author Catherine Campbell, who told Lucy’s story in her book ‘When We Can’t, God Can’, said that many people have been “encouraged and blessed” by Lucy’s life.
She wrote: “I am so blessed to have met this amazing little girl, and feel (her parents) Stephanie and David’s pain very keenly. How I pray that the God of all comfort will meet that need for them each and every day.”
Lucy’s funeral will take place on Thursday at 12.30pm at Drumlee Presbyterian Church.