Molly leads charity’s Christmas appeal

Gabija Gataveckaite

A BRAVE Southside family has been selected to be the face of a major charity’s new Christmas campaign.

Barry and Mairead Jones, from Shankill, are parents to Molly, who was diagnosed with Ring Chromosome 18 at birth.

Molly, who will soon turn eight years-of-age, is non-verbal and relies a lot on her parents and for support.

Now, Southside palliative care charity, LauraLynn, who strive to make “the most of short and precious lives” have selected the Jones family to be the face of their Christmas appeal.

In December 2010, Barry and Mairead welcomed their first baby into the world, Miss Molly Jones.

But a fairytale Christmas was turned upside down as doctors advised that Molly’s chances of survival were incredibly slim. 

She had been diagnosed with a rare condition called Ring Chromosome 18 as well as Global Development Delay and a serious heart condition.

As a result, Barry and Mairead, who are also parents to Cara (5) and Elsie (4) got involved with the charity.

 “A few years back we were advised to apply for respite and we did,” Barry recalled. “When we met the team, they were very accepting and helping.”

LauraLynn is the only children’s hospice in Ireland. Founded in 2011, it offers many services free of charge for families who have children with life limiting conditions. It offers short break stays, symptom management and other family supports.

The Jones have been selected to be the face of this year’s LauraLynn Christmas appeal and have found the charity to be a lifeline when an extra hand is needed. 

“LauraLynn provide overnight respite care for Molly and we can’t get that anywhere else,” Barry added. 

“Just to have LauraLynn facilitates us doing normal things. We can drop Molly up and take the kids to the cinema, or even go away for a weekend, which we would have never been able to do before.”

LauraLynn provides respite care for Molly and Barry described it as a “home away from home”.

“It’s very hard to leave a child with a stranger, especially when they’re medically challenged,” he explained. “But we know Molly is safe and looked after. Her bed at LauraLynn is exactly the same as the one she has at home and the staff always ask what she would like to do while she’s there – take a bath or go for a walk. 

“It’s a huge comfort to know she’s happy there, and enjoys her time there. She always comes out really relaxed,” he said. 

And at pivotal moments, the charity has been there to offer exceptional care when required.

“A few weeks ago, Molly had some issues falling asleep and the charity helped us out with a paediatric consultation.

“As she wasn’t sleeping, we were all wrecked,” Barry said. “They recommended some pattern changes and this was really vital for our family. It’s a comfort to know that there’s professional people there who also have a warm side.”

In total, it cost approximately €5 million to provide palliative services for the charity this year. Around €4.2 million of this is raised through fundraisers and appeals, with the rest provided through statutory funding. 

“Through our Christmas Appeal we have an opportunity to connect with and build relationships with donors who may wish to support the work that LauraLynn does,” a spokesperson said.

“Our Christmas Appeal is a direct mail pack that is delivered to homes around the country.”

Through this direct mail, this year we have shared the story of our LauraLynn family, the Jones’s. Hearing a story such as Molly’s, helps build awareness and understanding about what the LauraLynn hospice offers and the impact the services have on our families. The pack also contains an option for the reader to donate to the hospice should they so wish.