The story of our very special, Miss Molly…When your child has a life limiting condition every moment even more

The snowy Christmas of 2010 had all the makings of a fairy-tale for my family.

On December 21st our first baby was on her way, arriving at 7:30pm weighing just 6lbs. Struggling to breathe, Molly needed oxygen and incubation. Molly had also been born with a cleft pallet and an overlapping toe that doctors felt were a cause for concern. Despite this we were so happy our little girl was here.

Our joy was short-lived when an ECG determined Molly had a heart murmur and we were told her chances of survival were incredibly slim. Our world came crashing down. 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 thought we’d never get to take her home in. We showered our Molly with as much love as possible, every minute of the day.

If our daughter was only going to life for a few days then we were going to pack a lifetime of love into that time.

Thankfully Molly wasn’t ready to say goodbye and we were able to take her home. We were so happy to have Molly home but her medical needs were so complex we wondered how we’d cope.

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 we were overwhelmed. But now, eight years on, we must be doing something right as Molly is still with us. Not only that, but she has two little sisters, Elsie, four and Cara, five.

Cara, Elsie and Molly Jones

Our priority has to be keeping Molly as happy and healthy as possible, which includes round-the-clock care and a constant string of hospital appointments. Molly has a different consultant in Crumlin for every organ in her body. Unfortunately that means that our other two 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.

For Cara and Elsie that meant going on their first family holiday, a two-day trip to Galway. For us, that trip would never have been possible without LauraLynn, as we were comforted knowing Molly was getting the best possible care while we were away.

When we go to LauraLynn we know we can relax with our children in a way we can’t when we’re at home. Having the LauraLynn team there to make sure all of Molly’s medical needs are taken care of gives us a chance to concentrate on being a family. All three of our girls love it there, especially Molly.

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.

Please, this Christmas, help a family like ours make the most of every moment of their child’s life.

Yours with warm Christmas wishes,

Molly’s parents, Mairéad and Barry Jones

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