Special party in aid of Lucy’s Progeria Fund
AS little Lucky Parke gets ready to celebrate her third birthday in November, her proud mother is preparing a report on her “inspirational” daughter’s progress which she will give at a special fundraising event to be held in her name this month.
Lucy, as many readers will be aware, has the rare condition of Progeria which causes premature ageing - up to eight times faster than normal - and there are only around 95 cases worldwide.
The little Ballyward girl faces an uncertain future with the condition ranging in severity and the average life expectancy just 13 years, but she has recently started to walk and her delighted parents continue to be amazed by her determined personality as well as her progress.
“I’m glad to report Lucy is doing really well at the moment and is very healthy,” said mum Stephanie ahead of the fundraising night for the ‘Lucy Parke Progeria Fund’ at Moneyslane Orange Hall next week. “She is eating better, despite the fact she has no teeth, and she is now mobile and able to walk short distances, so we are very thankful. Lucy continues to be a wee inspiration to everyone around her.”
Stephanie, who also has 19-month twins, Jake and Jenny, will give a short talk on the condition and how Lucy is faring at the event being hosted by Moneyslane Cultural and Rural Development Association.
“It takes the form of a ‘Bodyshop at Home’ party and funds will go towards securing Lucy’s future, as at the minute, we don’t really know what that will be,” added Stephanie, who says the family has been sustained by prayerful support from Drumlee Presbyterian Church over the past two and-a-half years.
She added, “I believe God gave Lucy to us and she has enlightened so many lives already. We continue to stay postive and support the Progeria Research Fund in America which is carrying out a lot of good work into this condition.”
Stephanie said the family was also encouraged by the feedback gained from other parents of Progeria sufferers at a conference in Italy during the summer.
“Around 20 families from all over Europe attended the event and it was good to hear other people’s stories and compare notes.”
Lucy is the only child with Progeria in Ireland and although the disease has not affected her brain or learning ability, there are some physical symptoms which she is starting to notice herself.
“Lucy is now becoming more aware of the fact she has no hair and is very small for her age, but she doesn’t dwell on it for too long,” says Stephanie. “We are just so thankful that she is now walking about, as children with Progeria often suffer from arthritis. Lucy has had problems with her joints, particularly her fingers and knees, but at the minute, nothing is holding her back.”
The ‘Bodyshop at Home’ party is on Friday, 19th October, and starts at 7.30pm. Light refreshments will be provided and everyone is welcome.
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Saturday 18 May 2013
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