What’s wonderful is that someone thinks of your child’.
‘’Had somebody beaten me up, it wouldn’t have been as bad as this’’. That’s how David Crowe remembers when doctors told him and his wife Mary that their four year old daughter Sarah had Alpers’ disease, a progressive, incurable condition affecting the brain and liver.
‘’She was a beautiful, healthy baby when she was born on August 1st 2003’’ says David. ‘’When she started walking at 18 months, she had an unusual gait, but we weren’t unduly worried’’.
‘’She would sometimes vomit, go pale and sleep for a few hours then wake up perfect. We didn’t know it then, but it was seizure activity, a characteristic of Alpers’ disease.’’
Sarah was diagnosed in 2007 and David says ‘’Our world fell apart. I asked the doctor: ‘Can she have a life? Can she go to school?’ He said he didn’t know.’’
Sarah did go to the local primary school in Kilfinane, Co. Limerick, where David said she is treated like a superstar. ‘’The other kids are fantastic with her and she thrives in that stimulating environment’’.
The couple decided that Mary would continue working while David gave up his job as a courier to become a full time carer for Sarah and their son Jimmy, now seven. Things were tight, but when David’s sister told him about Cliona’s Foundation, at first he didn’t want to know.
“It was still very raw”, he says. “I didn’t want to admit that she had a life-limiting disease. Accepting help made it a reality”.
He relented though and when Cliona’s Foundation made a donation; he knew what he wanted to do with the money. Sara was unsteady on her feet and had a habit of falling over.
“I had special rubber tiles laid in the back garden so that she could get about on her tricycle and if she fell off, she wouldn’t hurt herself. It gave us great peace of mind that she could go out and have fun. She can no longer walk but for the time she had out there, she had a bit of normality and even now she can sit on that surface while I’m tinkering with my motorbike.
He has tremendous respect for the work done by Cliona’s Foundation.
“What Terry & Brendan do is amazing. It’s not even the money – although we had spent a lot of our savings going up and down to Temple Street Hospital in Dublin but what’s really wonderful is that somebody thinks of your child”.
“I didn’t know these people and they didn’t know me. They knew only that we had a sick child and wanted to help. I was stunned. It’s very hard to explain. You have to be in a situation like this to understand how much that means”.
