Jacks’ Story

Jack is nine and lives in Bromsgrove, Worcester with his mum Catherine and two siblings Oliver and Maisie. Jack’s birth was quite traumatic for both him and mum. Catherine told us “The umbilical cord was twisted around his neck twice as he was delivered. His skin was black because he had been starved of oxygen so he was quickly transferred to cooling mats for the doctors to look after him.

"Finally, he managed to breathe on his own if it had been seconds later, he wouldn’t have made it. As a result, Jack has cerebral palsy and epilepsy, as well as abnormal arm movements and spasticity in his legs, which require a lot of physio. He has a feeding tube, and a tube in his nose which allows him to breathe properly. He also has seizures.”

 

Daily life and challenges

Before Jack was born Catherine thought she was incredibly squeamish, but through delivering his care she has had to overcome that. “I change his tubes in his nose and tummy as well as administer his medication which involves lots of needles. We usually get up at about 5am at the moment as Jack needs to be turned during the night, so I do that. While I’m getting him up, the younger two come downstairs and have their breakfast. They’re very independent for their age, which is so helpful.”

“Jack has a carer, Louise, who arrives in the morning to help me. He will have his breakfast, and then have a rest before we do some physio together. Oliver is three so will do some arts and crafts, watch Mr Tumble, and generally entertain himself. At the moment, Maisie who is about to turn eight, is doing school work from home.”

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“Both Oliver and Maisie are very sensitive to Jack, which is lovely. We all sit together and Maisie reads to him, you can see him smiling as he enjoys it so much. Maisie is still learning to read, so sometimes if it goes on a bit, Jack will make an ‘OOO’ face and sound at her to let her know. At teatime, I’ll do the younger ones something easy so I can sort out Jack’s tube. Maisie is very caring and wants to learn to be able to help more.”

 

The impact of Jack’s condition

Jack’s seizures are something that the whole family has had to learn to live with. “Oliver and Maisie are used to them and don’t get scared. They can see the symptoms and know to come and get me so that I can be with him.”

“We can’t plan anything like holidays or day trips in advance as we never know what’s going to happen but Jack loves visiting busy places, and seeing the hustle and bustle. Even if he can’t be part of it, he loves the atmosphere of those things.”

“I was extremely scared about the pandemic at first and was so worried that Jack would need to go to hospital for something as he would normally have so many appointments. But actually, we ended up spending time in the garden which was nice, and having more time together.”

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How Family Fund helped

Family Fund has supported Jack for nine years now through a whole range of grants. “The first grant was for a washer/dryer and fridge freezer; Jack is tube fed so his food needs to be kept refrigerated. We were then provided a bed that kept Jack on an incline to prevent him from choking and made it easier for us to lift him in and out of bed. When he did have choking episodes, it meant the bed was high enough so that we could sit and comfort him.”

“We had the bathroom adapted to a wet room for Jack and Family Fund helped with funding for the flooring and then the next year a trampoline. Jack’s favourite subject at school was trampolining and he is at his happiest when he’s on a trampoline. It’s helped with his physio, especially his chest physio and has resulted in less chest infections.”

“Most recently you helped us with the cost of servicing his vertical lift and ceiling hoist, all things which keep him a bit more comfortable when going up and down stairs and showering. It also helps me, otherwise I would have to lift and hold him, which is getting more difficult as he gets older. All of the grants help him to be more comfortable in his day-to-day life, which is so important to us.”

Jack's story is part of Family Fund's #InTheirShoes appeal. To find out more and donate, click here.