“Quality time is hard to find” when raising a disabled child

Mason is 11-years-old and lives near Birmingham with his mum Jess, dad Kris, and younger brothers Archie who is nine years old, and Arthur who is two. Jess and Kris told us about the importance of spending quality time together, as a family. And by joining our lottery for just £1 per week, you can help families like Mason’s to ‘live in the moment and focus on the family’.

Tell us about Mason 

“During birth, Mason was starved of oxygen which caused cerebral palsy. He needs round-the-clock care, postural support to sit and he’s a full-time wheelchair user. Mason loves spending time with his brothers, especially with Archie who is closest to his age. They’ll spend time in the bedroom together playing computer games. When Arthur was born, I’m not sure how Mason felt about him getting so much attention. But now Arthur is old enough to bring Mason toys, and even tries to sneak him snacks!”

“Mason’s favourite thing in the world is family time. He loves it when we’re all together, going on family walks. He adores going to a café for a slice of cake.”

How does this impact your family life? 

“We recently moved into a bungalow, so we didn’t have to carry Mason up the stairs, and this was the best decision. The home is more accessible for Mason now, and it’s easier for Kris and I. Caring for Mason does impact on all aspects of our life. I’d just qualified as an accountant when Mason was born, and I had to give up work to care for him full time. Mason needs feeding, changing, interaction, stimulation and taking to regular medical appointments. 

“Before Mason started to attend Special Educational Needs (SEN) school it was isolating. I couldn’t attend baby groups with him as he didn’t gain from these interactions, and they’d just highlight everything that Mason couldn’t do. This finally changed when Mason turned three and attended SEN school, where we met families like ours who understood our situation. This was when we heard about Family Fund for the first time.”

What support have you received from Family Fund? 

“Family Fund has had such an impact on our lives. Only one of us is able to work, so everything we’ve received, like bedding and clothing, has made such a difference. One year, our washing machine broke and I was constantly worrying about affording a replacement. That’s where Family Fund stepped in to help. It means a lot.

“Our family has never had enough cash for things we consider a luxury, like a break away. One year, Family Fund contributed to fund a trip to Florida. It was magical, we had a villa with a pool that Mason loved. We’d never been on holiday before with Mason, so seeing him at Disney was great. He loves spending time as a family away. 

“During lockdown, Mason couldn’t attend his hydrotherapy appointments which really help his joints. Family Fund stepped in and provided us with a hot tub which Mason spent all summer using. This was so important for Mason’s health. 

“If that wasn’t enough, Family Fund purchased an Eyegaze for Mason. This technology allows Mason to communicate using his eye movements, so we can give him choices and he becomes less frustrated when he’s trying to tell us something. It allows us to communicate better with our son.

“The most recent grant we received was for a family break to Center parcs. We were really impressed by how accessible this was with Mason’s wheelchair, and how brilliant the swimming pool was. The boys spent days in the pool, and Kris and I felt refreshed. Being away gives you a quality time that is hard to find, you can cut yourself off for a few days and live in the moment, which is hard to do when you’re at home. At Center parcs, we could focus on our family unit.”