Jennifer Carroll cares for her two children, Alex, 8, and Ava, who is 3 and a wheelchair user. Both children live with a genetic disorder, osteogenesis imperfecta, which means that bones can break and fracture very easily. Jennifer is a single mum and takes both children from their home in Offaly to Crumlin Hospital for check-ups and treatments up to six times each month. Those days are long, often from 8am to 8pm. Jennifer does a lot of exercises with Ava each day to help prevent muscle weakness from using her wheelchair.
The condition means that Jennifer’s care is full time. “It is constant supervision with them. The slightest fall can become a fracture. Alex has had eight breaks and Ava has had three. I think they’ve adjusted to the pain. They go to Crumlin every three months for infusions to strengthen the bone. It won’t cure them but it helps reduce the likelihood of a break.”
While she appreciates these medical supports, the lack of supports offered in other areas is occasionally frustrating. Alex has a full time special needs assistant with him in school, but Jennifer has been unable to get one for Ava to attend preschool. The reason given was that SNAs are not provided at preschool level. “After the recent budget, they may do from next September, but that’s no good to Ava now, she’s missing out on the year”. Jennifer shows remarkable optimism and resilience in the face of these challenges. “Of course you would like to have more help,” she says, “but that’s life, and you get on with it”
If, like Jennifer, you care for someone you might find our Help and Advice section useful.