Molly Jones, Age 8
Molly Jones was born on the 21st December 2011 weighing a healthy 6lbs, however Molly struggled to breathe and needed oxygen and incubation. Doctors were concerned as Molly was born with a cleft pallet and an overlapping toe.
Mairéad and Barry’s joy was short-lived when an ECG determined Molly had a heart murmur and they were given the devastating news that Molly’s chances of survival were incredibly slim.
Mairéad, Molly’s mum reflects: “That’s when our fairy-tale turned into a nightmare. Our tiny baby had just arrived and now we had to prepare to say goodbye. Over the next few days, we spent every moment we could with our little girl, singing lullabies and nursery rhymes and dressing her in all the outfits we never thought we’d get to take her home in.”
When your child has a life-limiting condition every second and every memory, no matter how small, becomes even more precious.
Thankfully Molly wasn’t ready to say goodbye and after 18 days she was brought home. Molly was diagnosed with a rare condition called Ring Chromosome 18 coupled with Global Development Delay and a serious heart condition.
Molly finds feeding difficult, she doesn’t speak and her sight and hearing is also impaired. The most worrying part of Molly’s condition is the high risk of a bleed in her oesophagus and it is because of this that Molly needs constant care and monitoring.
As first time parents Mairéad and Barry were overwhelmed. But now, eight years on, they’re doing something right as Molly is still with us. Not only that, but she has two little sisters, Elsie, four and Cara, five.
“I won’t lie and tell you that it’s easy – it’s not, it’s exhausting. Looking after a seriously ill child and keeping up with our two other girls, giving them all the love and attention they deserve can be a hard balance to achieve.” – Mairéad Jones
Molly requires round-the-clock care accompanied with a constant string of hospital appointments – Molly has a different consultant in Crumlin for every organ in her body! Unfortunately this impacts on family life and means that Mairéad and Barry’s two other little girls miss out on things that other kids their age take for granted.
“That’s where LauraLynn has made such a huge difference to our family. The support we’ve received from LauraLynn allows us to give our three children the childhood experiences they each need and deserve.” – Mairéad Jones
When the family go to LauraLynn, they have an opportunity to be together as a family. Barry and Mairéad can relax with their children in a way they can’t at home, knowing that the LauraLynn team are there to look after all of Molly’s medical needs.
Louise O’Dea, Molly Jones’s Care Coordinator at LauraLynn shares; “Coming to LauraLynn was a big deal for Molly who doesn’t like change to her routine and also for Mum and Dad, trusting someone else with the care of their little girl whose needs are so complex.
But I’m so glad they did because everyone needs a break. In fact, it’s hard to believe how much Mairéad and Barry juggle on a daily basis; as well as taking care of their three girls, they both work outside the home.”
When Molly stays at LauraLynn, it’s not just about giving Mum and Dad a break, but also about giving Molly the most enjoyment out of her stay. For Molly that includes time in the sensory room and hydrotherapy bath, while our sensory garden is one of her favourite places.
Most visits will also include what we call ‘symptom management’ where our specialised medical team will look at Molly’s medication, her diet and her sleeping to see if any changes need to be made. It’s so important for families like Molly’s to have the support of LauraLynn.
For some families the time they spend in LauraLynn is the only break they get all year. Some use it as a chance to get a good night’s sleep, spend time with their other children or simply relax with their partner.
“Seeing how much Molly loves LauraLynn makes me incredibly grateful that we have this support in our lives. When your child has a life-limiting condition it can sometimes feel like you’ve nowhere to turn for help. But having LauraLynn on our side changed all that.”- Mairéad Jones
Please, help a family like Mairéad and Barry’s make the most of every moment of their child’s life. It is through your donations that we are able to support these families.