“The cost of living crisis magnifies what families like mine have already been suffering with for years”

Mum Jo, Dad, Jamie, and their children, Max, ten, Archie, six, and Aubrey, four live in Littlehampton, West Sussex. Max and Archie are both autistic.

Jo explains that Max’s diagnosis came as a shock for her. “I remember I sat there and I cried. The nurse said to me; ‘It’s OK, some people can take this diagnosis hard.’ But I wasn’t crying because he was diagnosed with autism, I was crying because I felt like I’d done him a disservice.”

“Archie was born with Group B Strep, the most common infection in new-borns that leads to meningitis, sepsis and pneumonia.” Archie’s first few months were constantly in and out of the Neonatal Intensive Care Unit. Jo adds: “Before he was two, we found out he wasn’t meeting milestones. He had an MRI and they found that he had brain damage like chicken pox all over his brain. As a result, Archie now has a diagnosis of autism, learning disabilities, immune deficiency, sensory processing disorder and some issues with his bowels.”

“The cost of living crisis has impacted us in such a huge way”

Like many families raising disabled or seriously ill children, who cannot cut down on essentials already costing more than the average households, Jo and Jamie are facing the reality of going into debt.

“Since our family need to do extra washing and have more baths, we’re seeing our utility bills go through the roof. Also, we’re having to do almost daily food shops. They can’t be avoided or adjusted due to the specific sensory needs and allergies of the children. Which results in food bills almost tripling in most cases. And we constantly have to have things like the TV on in the background to meet our child’s sensory needs. When you have a child that barely sleeps… then the costs add up!”

“As a family we’re exhausted and run down. We don’t have the spare money or energy to do things outside of the home. We feel isolated and alone. The creeping birthdays and upcoming Christmases put a lot of additional financial and emotional pressure on our situation. There’s not a single day that passes where we’re not having to fight for help or seek relief. It sounds awful, but it’s true.”

“The cost of living crisis affects us greatly, but it only magnifies what families like mine have already been suffering with for years!”

How Family Fund grants helped

“We have applied to Family Fund four times now. The first time our washing machine packed up, and since Archie is incontinent our washing machine was constantly working on rotation. We actually ended up getting a 9kg washing machine just so that it could support big loads. And I know it sounds odd, but it actually helps financially with a bigger washing machine because you use it less.”

“Then our cooker packed in and Family Fund helped with that. The kids eat so much so it was really important for us to get a double oven. It came with a five year warranty as well to give us that peace of mind in case anything goes wrong.”

“Family Fund also helped us get Archie a better mattress. The boys share a room but Archie doesn’t sleep at all. So, most of the time either my husband or I end up in there with him to try to keep him calm for as long as possible. Having a double bed has really helped.”

“Most recently, we received a grant for an iPad which meant we could get special apps for Archie, and school can send over links for homework. He’s a visual person so we get specialist videos up on there for him. It’s also got a really nice hard case for when he lashes out and launches something across the room, it’s safe.”

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.