| 1.1°C Dublin

covid impact 'They are a lifeline for families like us' - Parents of young boy with rare disorder praise Jack and Jill

Parents thank locals as they fundraise for children's charity to help support families

Close

Mum and dad Alyson and Jonny with Odhrán

Mum and dad Alyson and Jonny with Odhrán

Little Odhrán with his big sister Isla Mae

Little Odhrán with his big sister Isla Mae

/

Mum and dad Alyson and Jonny with Odhrán

The family of two little boys born with a rare genetic condition have told how their community rallied behind them as they sought to fund nursing hours for other seriously ill children.

Jonny and Alyson Farrell held a festive winter wonderland and were overjoyed at the support they received.

Their boys Cillian and Odhrán were both born with a serious genetic condition known as Trisomy 9p and Monosomy10q, named after the genes affected.

Tragically, Cillian passed away at the age of four.

The Farrells and their community in Claregalway have raised more than €32,000 for Irish charity Jack and Jill, which has been badly impacted by the pandemic.

The charity provides home nursing hours, caring for seriously ill children in their homes and providing a badly needed lifeline for families.

"Odhrán has a number of medical care needs," said mum Alyson. "He is fed into his small bowel 24hrs per day, he has epilepsy and a number of other issues. Odhrán is currently cared for by Cathy Keighery and nurse Ronnie Keady.

"Ronnie is like part of our family and is referred to as Granny Ronnie by Odhrán's big sister Isla Mae."

Cathy also knew Cillian and the charity provided the family with nursing support until he tragically passed away in 2010, at the age of four.

Their care has always been crucial to them as a family, Alyson said, but never more so than since Covid struck.

It's meant that Odhrán can spend more time at home than in hospital and is less prone to picking up infections. In fact, this is the first winter in the three year old's life that he hasn't been seriously ill with bronchiolitis.

Supplies

"This service is a lifeline to families like ours, ensuring that Odhrán stays out of hospital as much as possible or has a reduced length of stay.

"It allows us do basic things like shopping, pharmacy collections, collect Odhrán's medical supplies and so on. Jack and Jill are not just a lifeline to us as a family but also to Odhrán's quality of life by being able to keep him at home and safe through this pandemic.

"After Odhrán was born he ended up on breathing support in the neonatal intensive care unit," said Alyson.

"He had breathing and feeding difficulties, two holes in his heart. From there up to now he has huge feeding difficulties.

"He has epilepsy, gastrointestinal issues and global developmental delay."

Despite all of his challenges and difficulties, his proud parents have noticed the three-year-old has been doing well recently.

"He's come along quite a bit in recent months. He's non verbal, but he's full of devilment! He's very sociable, he's a very happy guy, all things considered.

"In the last six months his personality is really shining through. And part of me is wondering is it lockdown in a way?

"This is the first year he's not been on breathing apparatus through winter. It's a huge thing to take out of what's been going on, really.

"He hasn't been sick, he hasn't been in hospital. There have been very few cases of bronchiolitis this year.

"He has been sitting up independently, which is a huge milestone. He's been picking things up and holding things in his hand.

"They're both huge and have helped him blossom. His sister Isla Mae has been here playing with him, she's very good with him. There are only 14 months between the two of them."

In 2010, the family suffered the devastating loss of the children's big brother Cillian.

He had the same condition as his sibling, but struggled with a serious form of epilepsy which cost him his life.

"He was the starting point of our family really," said Alyson. "We knew about his condition before he was born. He had breathing difficulties.

"His huge issue was Lennox-Gastaut epilepsy. He'd have been active and mobile but when the epilepsy got really bad he lost some of his milestones. That's how we lost him, through his epilepsy."

Nursing

As they do now, Jack and Jill then came into their home and altered their lives.

"It was a lifeline for us. It's how we function. When Odhrán was sick a couple of months ago we were able to bring him home. We could do the medication changes and increases at home because we had nursing supports.

"They're a huge emotional support. During the first lockdown we had no nurses. Covid has presented us with those challenges. In between, it has been just great having a different face coming into the house.

"The nurses provide emotional support and practical support too because of what they do."

Over the past couple of weeks, the family's community has supported them greatly in fundraising.

"A Drive Through Winter Wonderland near their home in Cregmore, Claregalway raised €6,000 and an ongoing gofundme page, Woodland Winter Wonderland in Aid of Jack and Jill, has already passed its €20,000 target, said Alyson.

"We can't thank everybody who supported us enough. We didn't dream we'd raise as much as we did. It's been a really tough year for everybody, and it was brilliant to bring joy to kids just before Christmas."

See GoFundMe Woodland Winter Wonderland in Aid of Jack and Jill.

While Jack & Jill's eight charity shops have been closed again this month, shoppers can browse for bargains on www.thriftify.ie.

Download the Sunday World app

Now download the free app for all the latest Sunday World News, Crime, Irish Showbiz and Sport. Available on Apple and Android devices

Sunday World


Privacy