Toddler battles one of rarest diseases

Toddler battles one of rarest diseases

By Stuart Campbell

THREE year-old Lucy Parke is like so many children in County Down.

She is an older sister who loves playing with two-year-old twins Jake and Jenny and is a devoted daughter to her loving parents David and Stephanie.

But unlike so many children Lucy, of Drumlee, was born with an incredibly rare genetically determined disease called Hutchinson-Gilford Progeria Syndrome.

There are only 100 known cases in the world and Lucy is the only child in Ireland with the condition, which causes premature ageing and means Lucy's little body is ageing eight times faster than other children's.

Lucy was born normally on November 10, 2009, but at four months she had to have a hip operation and she has contractions of her knees and ankles. She was a poor feeder and wasn't putting on much weight and then at nine months she was diagnosed with Progeria.

She has normal mental ability like any other child, her appetite has recently improved and she has started to walk short distances.

Like any other three-year-old Lucy likes to talk and sing, but unlike other children she has growth failure, loss of body fat, hair loss and a poor appetite. From an early age Lucy will have arthritis and heart problems which will contribute to a shorter life.

Stephanie Parke said: "We have been to two reunions in England, October 2011, and Italy, December 2012, with the European Family Circle and we are going to one in England in August for six days.

"It's a good opportunity for Lucy to meet other children like her and have the same limitations. She is very shy but when she gets to play with other children she comes out of herself.

"Last year there were 20 families from all over Europe. We keep in touch with other families through Facebook, we may not understand the language, but we can see pictures.

"Lucy doesn't know how far away they are. We are in contact with a family in America and to her they could be just around the corner.

"It does help knowing what other people are doing. It's not nice to learn that other children have passed away, but it's good to find out so we can write to them to say we are praying for them. Four children have passed away since we first went to the European Family Circle.

"It will be harder when she gets older how people will react to her. At Children's Church, where she goes all the time, no-one bats an eyelid anymore, but in pre-school that may be different at first. I think she will be quite reserved at first but she talks about it all the time.

"We are very grateful to everyone who has helped her financially and in prayer over the years.

"At the minute there is no type of treatment, but the Progeria Foundation are trying to find a cure. Because there are so few children in the world there is limited research able to be done.

"We just want to minimise her pain and give her the best quality of life. A lot of the children we have met have been on trials but we just want what is best for Lucy in the long run," she said.

Lucy has regular hospital check-ups and at the minute she is a healthy child, but David and Stephanie are in contact with doctors from Progeria Research Foundation in America and France to see find out about possible treatments, if any, Lucy will start.

The Lucy Parke Progeria Fund was started shortly after Lucy's diagnosis in 2010 as friends, neighbours and strangers wanted to help in whatever way they could.

At this time Lucy has all she needs and money has been raised for when she needs to make life easier for her, or treatment which may not be funded by health boards.

Lucy's parents have a strong Christian faith and Stephanie said: "Lucy was sent to us for a reason and we thank God for her daily. She has enlightened our family and we have grown closer to God and stronger in our faith because of her. She has changed our lives and will continue to impact the lives of so many others in Northern Ireland and throughout the world."