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20th Dec 2018

The help of LauraLynn was an ‘overwhelming’ relief to mum of sick child

Amy Nolan

'The relief of hearing LauraLynn was willing to help us was overwhelming' says mum of sick child

Molly Jones defied the odds and celebrates her 8th birthday tomorrow.

Having a sick child is every parent’s worst nightmare. Winter 2010 had “all the makings of a fairytale Christmas” for Mairéad Jones and her husband Barry who were expecting the birth of their little girl.

This elation quickly transcended into absolute tragedy as baby Molly was born very ill. She weighed a minute 6lbs and was struggling to breathe. Molly had also been born with a cleft pallet and an overlapping toe that doctors felt were a cause for concern.

Compounding this, an ECG confirmed Molly had a heart murmur and was given little chance of survival.

Heartbreakingly, Maireád reflects back on that time saying:

“We sang her lullabies and nursery rhymes. We dressed her in all the outfits we thought she’d never get to wear home.

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

Molly was diagnosed with a rare condition called Ring Chromosome 18 as well as Global Development Delay and a serious heart condition. She doesn’t speak and both her sight and hearing are also impaired. Molly’s mum says:

“One of the most worrying parts of Molly’s condition is the high risk of a bleed in her oesophagus. It’s because of this that Molly needs constant care and monitoring.”

Against all odds, Molly has survived and tomorrow marks a very special occasion – her eighth birthday. She’s certainly a fighter!

Her success is in no small part due to the phenomenal care, love and support her parents and little sisters, Cara and Elsie have provided her with.

Molly’s needs are complex and demand a lot of time from her parents as Maireád explains:

“Our priority has to be keeping Molly as happy and healthy as possible. That includes round-the-clock care and a constant string of hospital appointments. In fact, Molly attends a different consultant in Crumlin for every organ in her body.

Unfortunately that means that our other girls miss out on things that other kids their age take for granted. Planning family outings in advance is impossible. At a moments notice, Molly can deteriorate. Just last summer she required two blood transfusions and an iron transfusion.

But that’s where LauraLynn comes in. The support we get from LauraLynn allows us to give our three children the childhood experiences they each need and deserve.”

LauraLynn, Ireland’s Children’s Hospice, is the only children’s hospice in the Republic of Ireland, providing palliative care to children with life-limiting conditions (aged 0-18 years) and their families from all across Ireland.

Their holistic approach to care intends to support the whole family, allowing patients to be children and parents to be parents rather than full-time carers.

Indeed, Maireád says of the charity,

“When we go to LauraLynn as a family Barry and I can relax with our children in a way that we can’t when we’re at home.”

LauraLynn provides a host of different services. They have made sure all of Molly’s medical needs are taken care of and have facilitated short-term stays so that Maireád and Barry can not only have a much-needed break, but it also gives them a chance to tend to Cara and Elsie’s needs.

You can find out more about LauraLynn here or offer a much-needed donation to help children like Molly here.

We’d like to wish Molly a happy birthday and a very merry Christmas to the Jones family.