Support from the Marian Elizabeth Trust

Eight-year-old Harry lives in Peterborough with his mum Katie and brothers, Lewis and Jack. Harry was born with Down’s syndrome, and he’s received further diagnoses for other conditions including autism. 

Katie explains, “I found out when I was four months pregnant that Harry had Down’s syndrome. A few years later, when Harry was three, he was also diagnosed as autistic. Now that Harry is eight, he attends a specialist school for disabled children which he absolutely loves. They support him a lot. 

Day to day life

“Harry is nonverbal. As his mum, I know what his needs are and we’re able to effectively communicate, but if a stranger were to meet Harry, then they wouldn’t understand him.

“Harry must be supervised at all times, since he has no danger-awareness and his mobility isn’t great. He didn’t learn to walk until the age of six and he suffers from severe hypertonia, so he has low muscle tone and poor balance. Due to the hypertonia, Harry also has a high risk of aspirating so he’s on a blended diet. In terms of sleep, Harry tends to wake up several times each night and at most only sleeps for five hours, even with melatonin.” 

Katie adds, “Harry has an amazing personality – he’s always smiling and laughing. He’s such a happy and loving little boy who loves cuddles and kisses. He’s someone who finds pleasure in even the smallest of things.

“Harry’s conditions affect my family’s day to day lives massively. Even if I just need to go to the toilet or nip to the bins, then I need to put Harry behind the baby gate so he’s safe. When we go out together as a family, Harry’s conditions can have a knock-on effect on his younger brother. If Jack wants to play in the park, which Harry has no interest in doing, then Jack often has to miss out or he goes alone.” 

Support from the Marian Elizabeth Trust

The Marian Elizabeth Trust has supported Harry by providing a grant towards a bed and mattress, bedroom furniture and with an iPad. 

Katie says, “We had the house adapted so that Harry could go from sharing a bedroom with Jack to having his own bedroom downstairs. At the time, Harry was still in a toddler bed which was too small for him, so the new bed and mattress were more suitable for his size and therefore provided more comfort in his new bedroom.

“With the furniture grant, I purchased two lovely chests of drawers which fit with the theme of the room. I also managed to buy a toy box to organise his toys and sensory equipment. Harry’s bedroom is his safe space that he likes to go to when it gets a bit overwhelming.

“I wouldn’t have been able to create this space for him without the grants we received”

“The tablet grant has had a massive impact on Harry. He absolutely loves using his iPad, and it’s taught him to use his index finger. It also allows me to get on with my chores whilst Harry is occupied. It’s a lifesaver! 

“Family Fund and the Marian Elizabeth Trust are amazing! Without the two organisations, I wouldn’t have been able to afford to provide items that can stimulate and support Harry with his conditions.

“The grants have made a massive difference to not just Harry but to my whole family. Our lives are less stressful and Harry is happier.”