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This summer, families raising disabled or seriously ill children are facing six weeks without support or respite care. All whilst changes to routines and lack of accessible activities cause stress and overwhelm.
Families tell us support during the holidays is almost non-existent, with 98% of families saying they have have no access to formal childcare outside of school.
Our Summer for everyone campaign is raising awareness, as well as much needed funds, to support families with grants that can transform summer – for things like outdoor play equipment to give a seriously ill child a safe space to play, and digital devices that offer entertainment and connection for a disabled child, as well as a much needed break for parent/carers.
Tracy’s story
Tracy tells us how summer looks at home with her son, Jacob, and how a grant from Family Fund brings moments of peace.
Jacob, 8, was born with down syndrome and a hole in his heart. He had surgery at six months old. He has ADHD, bowel issues and mild hearing loss.
During summer months, Tracy has to think very carefully about what she can do with Jacob. Due to Jacob’s ADHD, he is on the move constantly and has lots of energy.
Tracy tells us: “I’m off all of the school holidays, which sounds good but it is really, really hard work. Days out are hard as he is a runner. Even going to the park for a picnic, it’s my worst nightmare as he can run and run, and he doesn’t want to hold my hand anymore as he is eight. I am quite anxious about it.”
“It’s a long time be off over the summer – weekends are hard, so six weeks is going to be tough. Jacob has to be active every single day. He also can’t understand timings, so I can’t say ‘on Thursday we are doing this…’ because he will think we are going now.”
“The more active things are better for him to keep him moving. He loves football but he doesn’t get the rules, so he can’t go to the football clubs.”
“It’s hard with holiday clubs. He has friends who can go in all week, but we have the odd day here and there. He wants to be around children just like they do. His school had a club but they cancelled it, which is such a shame. A lot of his friends from his old school go to holiday clubs and trips, but they won’t take Jacob in. I feel he misses out.”
Tracy says, “the only good thing is that he doesn’t know he misses out. I know what they are doing but he doesn’t because he doesn’t have that understanding.”
Tracy tells us she would love to see more SEN places and activities that aren’t really early in the morning. She’d also like be more places, like parks, that have enclosed areas, not just for babies.
How Family Fund have helped
Jacob received an iPad and Tracy tells us, “it helps calm him down at night. He’s not on it all the time, but when I’m making tea, he can sit on that iPad and it’s like ‘phew’.”
Jacob’s family also received a grant for a family break to Haven. “Going to open places isn’t great for us as he will just run off – he ran off in the supermarket lately and everyone stared at us thinking he was a naughty boy. At Haven, they had assault courses like a climbing wall, which he loved. The staff were so good with him. Things he wouldn’t be able to do on his own, the staff helped him. And he loved the night time entertainment.”
You can help more children like Jacob experience the joy of summer
Whether you’re able to donate, hold a summer fundraiser or share our campaign, every action you take helps us to give families the support they deserve this summer.