Watch Thomas' story
Thomas has ATR-X Syndrome, which means he’s unable to walk and talk. Doctors believe Thomas has a severe form of the syndrome. Thomas has global developmental delay, and developmentally is at six months old. Little Thomas is fed by gastric tube as he isn't able to eat using his mouth and is prone to recurrent chest infections because his condition means he doesn’t take deep breaths.
For Bethany and Jack, Thomas' mum and dad, THE BUILD will give their family new experiences and make stays at Martin House with Thomas easier to manage.
One of the things Bethany and Jack are looking forward to most is taking Thomas swimming for the first time in our new hydrotherapy pool.
Jack said: “We’ve never had the opportunity to go swimming as a family, it’s just too challenging. But we could introduce Thomas to a swimming pool experience in a safe environment with people around us to support us."
“Having a hydrotherapy pool with specialist equipment and additional help on hand, it would just make all the difference.”
When you have a special needs child, everything is about Thomas. But at Martin House, they ask ‘how are you?' Because we never ever get asked...It’s just an extended family. They genuinely are invested in you as a family and your child, and want what’s best for you.
Not only will THE BUILD give Thomas' family an opportunity to swim together for the first time, piped oxygen technology in each of the children's bedrooms will make a stay at Martin House much simpler to prepare for too, taking pressure off Bethany and Jack.
Thomas’s condition also means he needs oxygen at night, and if he’s unwell, often through the day as well. Currently when Thomas comes for a stay, Bethany and Jack have to arrange to have oxygen delivered to the hospice.
Jack said: “When you’re in a rush to get to Martin House because he’s unwell, all you want to concentrate on is getting Thomas in the car and getting him there, so having one less thing to worry about will be such a weight off our shoulders.”
One of the results of Thomas’s condition is that he doesn’t sleep well, which means Bethany and Jack are constantly sleep deprived as they have to get up multiple times a night.
Jack said: “During our respite stays, we often come with our other two children, Arthur and Catherine. At the moment we either have to get two separate rooms because there’s four of us, or if there’s not enough space, we all have to squash into one room."
Our children need a respite as much as we do, so the new family rooms in THE BUILD means we will be able to stay and have enough space. That’ll be amazing for us – having the comfort to give all of us a break will be amazing.
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