Couple doing 10-day challenge to raise funds for children’s hospice in memory of their daughter Lucy

Couple doing 10-day challenge to raise funds for children’s hospice in memory of their daughter Lucy

6 November 2019

LITTLE Lucy Parke would have celebrated her 10th birthday on Sunday had she not had died from a genetic condition which caused her body to age faster than normal.

The child sadly passed away at her home outside Castlewellan on New Year’s Day, 2018, after months of illness.

Known as Princess Lucy to her loving parents, she and her family were cared for at the Northern Ireland Children’s Hospice on two occasions in her short life.

Her parents, Stephanie and David, are currently doing a sponsored 5k run every day over ten days to mark their eldest child’s birthday.

They aim to raise money to fund another family with a terminally ill child having a specialised medical bed and nursing care at home in the child’s final days.

Stephanie said:  “As Lucy died on January 1 last year, and November 10th would have been her birthday, we are doing a daily run for ten days in memory of her.

“We usually just run around our local roads, but David, myself and my two sisters took part in Castlewellan Park Run last Saturday. 

“I’m teaching temporarily at Newcastle Primary School a couple of days a week and my colleagues and some of the parents will be joining us for an after school run today. We are very grateful for the support.”

Lucy was diagnosed at nine months with progeria, a rare genetic condition from which most children do not survive beyond the age of 13.

Although her physical condition and appearance were different to that of other children, Stephanie says that her daughter’s mental abilities and her need to have fun and play were just like those of any other child.

She said: “We stayed at the hospice as a family on two separate occasions where we were able to use the facilities and have the back-up of a nurse at the same time.

“Lucy had the normal mental ability of a child of her age so she liked having us here with her and enjoyed the craic.”

The couple have three other children, eight year-old twins Jake and Jenny and four year-old Ben.

While they have fundraised for the hospice in Lucy’s name before, Stephanie and David were particularly attracted to its ‘I’m Coming Home’ appeal.

The specialised bed and at home nursing support cost around £470 a day.

“Initially we thought to raise enough to cover one day but we already nearly have enough to cover three days on our JustGiving page,” explained Stephanie.

“On Lucy’s 10th birthday, our money will cover the cost of a bed that day and she will be named on a roll of honour.

“For a child to be able to come home and for the parents to be with them and the other children in the family is so important.”

Stephanie said that Lucy became very ill from March 2017 and they got longer with her than expected once she came home from hospital.

“We were able to take her home as we were given great support from the community children’s nursing team at Craigavon Hospital,” said Stephanie.

“Because we had also such good support from the hospice and the paediatric doctor from Daisy Hill Hospital, we didn’t need to take her back into hospital during the nine months at home.” 

Despite the challenges her family faced, she and her husband feel blessed to have had Lucy in their family.

Stephanie, who helps husband David run a dairy farm, said: “We have a strong Christian faith and believe that it was just Lucy’s time [to go] and the Lord had given her to us for a reason. 

“We can see that so much in the people that we meet and the opportunities that we get to share our faith and the joy that Lucy brought into our lives as a family.”

To support the couple’s fundraising effort, please visit www.justgiving.com/fundraising/stephanie-parke.