‘Even at her lowest, Penelope smiles’
A Cork mother who survived the 2015 Paris terror attacks has launched a fundraising campaign for a charity she says has given “the gift of time” to her daughter.
Katie Healy Nolan has launched the online campaign for the Jack and Jill Children's Foundation, which offers home care to her and her husband David’s daughter Penelope Pearl, who suffers from a life-limiting condition.
Penelope suffers from a rare genetic disease called Pontocerebellar Hypoplasia (PCH), meaning she is nonverbal and cannot sit unaided, crawl, weight-bear, use her hands or eat and drink unassisted.
Penelope’s particular type of condition, of which there are just 60 cases worldwide, means she also has visual impairments, suffers with digestive issues and relies heavily on medication.
Katie and David received Penelope’s diagnosis on Christmas Eve 2018, a day after her second birthday.
The couple have been receiving home care from Jack and Jill for the past year, and started the GoFundMe campaign earlier this month to help other families in similar situations.
Saying she cannot imagine life without the charity’s help, Katie said: “Jack and Jill gave us the gift of time. Time to go out and collect Penelope’s prescriptions or just go for a swim.
“Penelope is not a child you can leave with just anyone. Before Jack and Jill, I had absolutely no help caring for Penelope, as people were nervous of her. My husband works full time, so weekdays were very challenging juggling it all by myself.
“Penelope has so many appointments, between meeting consultants, physio, occupational therapy (OT) and speech and language therapy (SLT), I was utterly exhausted and becoming overwhelmed.
“When Penelope is with her nurses, we know she is completely safe and with people capable of administering her medication and working her feeding pump.”
Katie and David first came to attention back in 2015 when they spoke about their experience of escaping the November 2015 Paris terror attacks, when they fled the Bataclan music venue in which 89 people were killed.
David, who was shot in the attack, proposed later that year. The couple recently welcomed a second child, son Teddy, who was born earlier this year.
“Everyone’s struggles are relative. We have to accept certain events and try to push forward,” reflects Katie.
“David lives with a very painful physical reminder every day and has undergone several surgeries to improve his injuries. Two months before the birth of Teddy, David had another surgery, hopefully his last. Our kids are the most important things in our lives. Now Penelope is a big sister she has to set a good example for her little brother. With Penelope’s fundraiser, she’s helping other families like ours, and that’s an amazing achievement for a two and a half year old!”
Katie says she and her husband were never comfortable fundraising for their daughter, and felt supporting Jack and Jill would be a better option.
“We wanted to help other families and the best way to do that would be by raising funds for Jack and Jill. Penelope is such an amazing little girl - people are just drawn to her. She’s so happy and full of life - even at her lowest, Penelope smiles.”
To donate go to gofundme.com/f/penelope-pearl-says-thank-you.
Ryan O’Neill
roneill@corkindependent.com