“We have to rely on taxis which quickly adds up”

This month, we’re asking parents about the cost of living crisis, and how the extra costs of caring for a disabled or seriously ill child are impacting their family. Mum Betty shares her story below.

“As a mother of a child with Cerebral Palsy and Sickle cell disease, I have first-hand experience with the extra costs associated with caring for a child with disabilities.

“My son, Louis, has had a very challenging winter due to our recent eviction from our previous housing and the subsequent move to a temporary house that is far from his school.

“Because of his mobility issues, Louis uses a wheelchair for his daily routine. Using the bus at this freezing time of year is difficult for his health and safety, so we often have to rely on taxis to get him and his siblings to and from school, hospital appointments, shopping, church etc. This adds up quickly to our daily living expenses. It is indeed really difficult to maintain a budget as every other day comes with its own challenges regarding spending.”

“The cold weather can be particularly dangerous for children with Sickle cell disease, so we have to keep the house always warm to prevent Louis’ blood from becoming sticky.”

“I have to buy him thicker clothing, thick cosy blankets, appropriately padded indoor footwear. Keeping the house warm at all times leads to higher heating bills and extra costs that we weren’t expecting.

“Despite these challenges, we still manage to attend hospital appointments, go shopping, and keep up with daily living tasks, but it’s not easy.”