They just wanted to be parents to gorgeous Rebecca so asked for help form Jack and Jill
A couple who lost their daughter to a rare disorder have abseiled together down the side of Croke Park to raise funds for the charity that supported them in their most challenging times.
Louise and Kieran Crowley lost their first daughter Rebecca, who was born with very complex medical needs, at the age of five and a half.
But earlier this month they took part in a Croke Park challenge as they fondly remembered their little girl — and raised invaluable nursing support hours for families who are now caring for ill children.
They were among a number of families who did so for Irish children’s charity Jack and Jill, cheered on by family members including Rebecca’s siblings Luke, Daniel, Andrew and Jessica.
“Rebecca was so loved, and she had so much happiness from our family,” said Louise. “All these families that are experiencing childhood illness now, they’re the most positive people you’ll find. It’s hard to believe that people can be so positive because it’s heart wrenching, watching your daughter sick and your child unwell.”
Kieran and Louise, who is afraid of heights, decided to take on the abseil after seeing a notice about the event on social media. “I follow Jack and Jill on Facebook, and I’ve always wanted to do something,” said Kieran. “But I never had the courage to actually get out there and just do it. And then this year, I felt ready. I just said: ‘I’m doing this’. And when I told Louise she said: ‘I’ll do it with you’.”
The couple even managed to hold hands for photographers halfway through the challenge, celebrating their little girl’s memory and cheered along by their family after overcoming any nerves coming up to the big day.
“After I signed us up to do it, there were a few nights where I was lying in the bed thinking: ‘What have I done?’” laughs Kieran.
“We just kept thinking, what we’re doing this for is so much more important. You come off the Skywalk, and then you start going down these steps, but once you get over the side, to do the abseil, you’ve accepted your fate!”
“When we had Jack and Jill, they gave us a certain amount of nights per week, and that was so important, because that was the night that you knew the nurse would be minding Rebecca, and you could sleep, or you could relax that particular night,” says Louise. “We were just so delighted to do something for all the other families who are still living like that.”
The couple were thrilled when they welcomed their first child into the world. Rebecca was born with very complex medical needs and was supported by Jack and Jill until she passed away in 2011. After becoming concerned about their baby in the weeks after she was born, the couple brought her to hospital where extensive tests showed that she had a rare neurological disorder called Lissencephaly.
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“Rebecca was our first and we didn’t know anything was wrong,” said Louise. “She didn’t present in any particular way. We went home as normal, and she was fine the first weeks, but then we started to notice little things like she cried a lot. She had low tone in her body. She couldn’t lift her head up, she couldn’t swallow very well, and she’d a lot of secretions. But the main thing that we noticed was that she started having seizures.”
Tests including MRI and other scans revealed that Rebecca had the rare neurological disorder. Devastated by the diagnosis, the family were determined that she would lead as full and happy a life as can be.
“She used to laugh and smile. There were certain things that we could do, like she had a special buggy that we sat her in. And if you spun her around in the kitchen she’d be laughing,” said Kieran. “The way we always looked at it was Rebecca was with us as long as Rebecca was going to be with us, and we spent all our time with Rebecca as much as we could.”
The support of the Irish charity, which has provided at-home nursing care to more than 3,000 families to care for their children at home, was invaluable, they say.
“The level of care required increased as she got older,” said Louise. “We really wanted to be able to provide this care for Rebecca at home, especially as our family grew and her two brothers arrived, Andrew when she was 18 months and Daniel a few years later. I really believe we only managed to keep her at home and with her family because of Jack and Jill.
“It wasn’t just the practical nursing help, it was the fact it let us be a family,” said Louise. “We wanted to be Rebecca’s Mammy and Daddy as well as being her full-time carers. Having the support from Jack and Jill allowed us time with our other children. There were many times we felt lost and hopeless and completely out of our depth and having our amazing Jack and Jill nurse at the end of the phone for advice and support was also of huge importance. We simply cannot ever thank them enough and their continued support for other families.”
You can still donate by clicking idonate.ie/fundraiser/KieranandLouiseCrowley
