HELPING OUT IN CRISIS TIMES
BALLYHEIGUE FAMIILY HELP OUT JACK AND JILL CHARITY IN CRIISIS
A RARE genetic disorder means little Bella Leen is facing a tough battle ahead, but despite her ordeal she is a smiley, happy oneyear-old who is the light of her parents’ lives.
Bella has a rare genetic disorder, Wolfhirschora Syndrome, which means she has low muscle tone, feeding difficulties, epilepsy and intellectual disabilities.
“We don’t know if she will walk or talk or sit up. She is full-time care, but in her own little way she is doing great,” said her Mom, Aisling. Her and her partner, James, both from Ballyheigue, suspected that Bella had Wolfhirschora Syndrome while Aisling was pregnant. In Bella’s case, the syndrome is genetic as her aunt, Roisin (23), also has the same rare syndrome. Having been diagnosed just a few weeks after she was born, Aisling and James faced a frightening road ahead.
They had suspected that she may have something wrong following tests during pregnancy, but it was not confirmed until after her birth in November, 2018.
“The syndrome is not always genetic but it is in my case. We were told when she was three weeks old in Cork University Hospital, and though we suspected something, it was a shock. It is very frightening.”
However, in stepped the Jack and Jill foundation to help look after Bella, and they have remained part and parcel of her life today.
Each week a local nurse comes in to help care for Bella for eight hours a week, giving Aisling a much-needed break – a break more needed than ever during lock-down as Bella is ‘ high-risk’ and cannot go out at all. Now due to funding difficulties, Jack and Jill finds itself in crisis, and Aisling and James have added their voices to a fundraising campaign to raise funds for the organisation. ‘Incognito part two’ is an online fund-raiser, starting this Thursday, May 28, at 10am, with almost 1,000 original pieces of post-card-sized art for sale. The art, which is valued at much more than its €50 price tag, is an opportunity to snap up original works by members of the Munster rugby squad, alongside art from Bruce and Patti Springsteen, Una Sealey,
The Project Twins, Vincent Devine and Martin Mooney . ‘Incognito part one’ raised more than €90,00 for the charity, which is facing a funding short-fall in the current pandemic. Jack and Jill helps support 340 families across Ireland, including one-year old Bella and her parents.
“We have 32 hours in a month, and it is brilliant. It is a life-saver. Not everyone can look after Bella, especially with her epilepsy. Despite everything, she is full of smiles and laughs and we are all mad about her,” said Aisling.
“Jack and Jill now need help, and we want to help them.”
Full details of the art sale is online at www.incognito.ie