Gracie’s condition has massively changed our financial situation

Alison and her partner Mark live in Littlehampton, raising their family of three daughters. One of their children, Gracie, is diagnosed with a rare genetic condition called Cardiofaciocutaneous syndrome.

“The syndrome is caused by a mutation in the RASopathy gene. Additionally, Gracie has epilepsy, severe learning disability and is nonverbal. She uses Makaton to communicate and uses a wheelchair and standing frame to aid her movement.”

“Gracie is prone to seizures and she’s been on ventilators twice on life support. She has a fragile health status and there’s a lot of uncertainty in our lives.”

“Gracie’s condition has massively affected our family life and our financial situation. We’ve had to move back to the UK from Australia. It was completely life changing as we had to sell our business and move closer to our family support network.

“I haven’t been able to work for a long time since I’ve been helping Gracie with therapies and appointments.”

The cost of living crisis is having a massive impact on us

We’re lucky that we have a house with solar panels and wood burners, although the energy prices will still go up for us to an amount where we don’t know how we’re going to afford it.

We are a cook from scratch family and all of the fresh produce has gone up in price. We try to eat healthy without any processed foods so our food bills are massive.

A nutritionist said that Gracie should be eating organic foods only. However, due to the cost of living crisis we can’t afford to buy organic and we’re now not cooking as much with the oven. We also have a spare fridge freezer that we use exclusively for Gracie’s batch cooked foods which we’re considering switching off.

“We don’t have any savings. I’ve had to return to work but that means I will lose a lot of my benefits, such as Carers Allowance.”

The crisis is making us rethink all of the systems that we have in place in our house and it’s forcing us to wise up. Gracie has a lot of necessary equipment that runs on electricity such as the stair lift and epilepsy monitors. We’re actively looking at ways to be more energy efficient.

Family Fund have supported us for several years. We’ve had grants including a tablet, a dishwasher and some bedroom furniture.

“Gracie loves iPads. It was life changing to be granted one by Family Fund. The touch screen technology allows her to self-entertain and communicate.”

How are the rising costs affecting you and your family?

Our research shows that our families have seen a huge increase in living costs while caring for their child and are having a make big cutbacks.

Read our Cost of Caring report to see the biggest impacts the crisis is having on families raising disabled or seriously ill children or young people.