Derry mum of three, Maryrose Ward, has to use up to 40 needles a day to lance painful blisters from her two year-old daughter’s body.
Little Charley Ward suffers from a rare skin condition called Epidermolysis bullosa (EB) which leaves her skin extremely fragile. The slightest of friction on little Charley’s skin can give rise to very painful blisters. There is no cure and it is a condition Charley will have to endure the rest of her life.
“There are families much worse off than us but it still breaks my heart when I have to lance her blisters every morning and every night,” Maryrose told the Derry Journal.
“God love her, I have to change the dressings on her wee feet every couple of hours and the only time she complains is at night when I lance the blisters. Most children don’t like needles at the best of times of but our Charley comes face to face with them everyday because of her condition but God love her, she’s a wee trooper.”
Next weekend ‘The Roaring Meg’ bike festival will kick off in Derry and the event organising team are planning to raise funds to help little Charley and her family.
Maryrose spoke to The Derry Journal of her happiness at the news and said she hoped to take Charley along to the event next week.
It’s the fifth year of ‘The Roaring Meg’ bike festival and every year the committee, which comprises of bikers and scooter club members from all over Derry, nominate a local family who need help with a sick child.
“I’d never even heard of ‘The Roaring Meg’ bike festival until they contacted me to say that they wanted to help our Charley. I am really thankful for everything they have done and hopefully I will be able to take Charley up to the event next weekend,” said happy mum of three, Maryrose Ward.
“We get a lot of help from an Irish charity based in Dublin called DEBRA Ireland. I have to take Charley to Dublin for treatment several times a year and each time they pay four our hotel stay - we would be lost without them,” she said.
As a result of Charley’s condition she is unable to take part in many activities with her friends.
Maryrose said she tries not to treat Charley any differently to her older brother and sister Gareth and Kayleigh but that despite her best efforts she sometimes can’t help herself.
“I have to use about 40 needles a day to lance the blisters from Charley’s body and something as simple as walking is a chore for her but she is a wee trooper. If her feet are sore she will walk on the heels of her feet - there’s no stopping her, she’s just a normal wee two year-old,” she said smiling.
“Obviously some children react when they see Charley’s scabs and blisters but the children in our street in Sherrif’s Glen are amazing - they all look out for her.
“My oldest, Kayleigh, wouldn’t stand for it if she saw or heard someone poking fun at Charley because of her cuts. It’s something we have become very used to as a family and as I always say, there’s is always someone much worse off than you.”
Roaring Meg Co-ordinator, Linda McKinney and community support officer, Danielle Devine said when they heard about little Charley’s story they wanted to do something to help out.
“When people think of bikers they sometimes have a negative image but believe me you wouldn’t believe the charity work some of the biker clubs in this city carry out.
“They might look like a bunch of scary men with beards but if there’s one thing they are all passionate about it is helping sick young children in Derry,” said Linda.
Danielle said she was touched when she first met with Maryrose and added that whatever money is raised during next weekend’s ‘Roaring Meg’ bike festival will hopefully make a difference.
“I have a wee girl the same age as Charley and I can’t even imagine what it must be like for Maryrose and wee Charley.
“Maryrose and Charley are so brave and the thing that touches me the most is that the two of them just get on with it.
“When I saw the photos of Charley’s poor wee feet I couldn’t help but feel for her. You hate to see any wee child in pain but when you see what she is going through everyday you can’t help but feel the desire to do something for her.”
‘The Roaring Meg’ bike festivals begins in Derry in next Friday evening when East Antrim biker club ‘The Quay Vipers’ will roll past Free Derry Corner and attend a mayor’s reception in the Gasyard Centre on the Leckey Road.
The bikers will stay in Derry on the Friday night and take part in the main event celebrations on the Saturday.
‘The Roaring Meg’ bike festival takes place on Saturday on the section of the Walls where the double bastion is located from 12pm to 5pm.
It is a family themed event and there will be entertainment, face-painting and plenty of opportunities for the public to view some amazing motorcycles and scooters.
For more information on ‘The Roaring Meg’ bike festival contact Linda or Danielle at the Gasyard on 02871 262812.
If you would like to find out more about Epidermolysis Bullosa (EB) or to make a donation visit www.debraireland.org