Eleanor stars in the McCain and Family Fund: 'Little Moments' TV Advert

Background

Eleanor is seven and lives in Cheshire with her mum, Zoe, and her brother.

She has a rare genetic makeup which has resulted in a diagnosis of Cole-Carpenter syndrome with osteogenesis imperfecta, a group of genetic disorders that mainly affect bones.

Zoe explains that Eleanor’s diagnosis “really opens your perspective to hidden conditions. I certainly appreciate the smaller things, and take each day as it comes. It’s taught me to be more thoughtful and considerate too.”

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Eleanor’s Condition

Zoe explains that Eleanor “had a late diagnosis at six months, and I had to research quite a bit as I wasn’t sure what it meant for her.”

Eleanor’s condition has a big impact on her body and movement. “She has brittle bones, and has to be in a wheelchair. She has metal rods in some of her limbs, and fractures very easily. The osteogenesis means that her skin is very fragile and thin. She’s had a broken spine, and breaks arms and legs very easily.

“She needs to go to hospital every eight weeks for bone strengthening, and mainly goes to Sheffield and Manchester children’s hospitals. She will have the condition for life.”

Zoe adds that Eleanor’s weak bladder can also cause difficulties. “We live a distance from her school, so we have to drive there. Unfortunately, as she has a weak bladder, it’s often the case that I’ll get her strapped into the car, and she’ll need the toilet. I’ll have to lift her back out to go. It’s trying, but doable.

“She needs help for the bathroom, but I’m sure a time will come soon where she doesn’t want help anymore.”

How it affects the family

Zoe says that planning things to do as a family can be complicated. “I constantly have to risk assess and plan everything. Even just going on a bus. Will it have wheelchair access? Will the pavement at the other end be too bumpy? Things like that.

“It can be really frustrating trying to find things that are accessible for her. We booked to see a show at the Grand Opera House, and the lady on the phone didn’t mention that they had wheelchair spaces. So we struggled to get her up to our original seat, before being told that there had been accessible seats further down. I had to carry her down the stairs to get there.”

Eleanor’s condition also limits what she can do, especially when certain activities aren’t accessible.  “She really wants to learn to swim, but the centre have said that she would need 1:1 lessons. But the waiting list is two years! I’ve even asked if I could get in with her and teach her myself, but they said no. We used to go to play centres, but she broke one of the metal rods in her leg so we can’t go there again.”

However, there are lots of things that Eleanor enjoys doing.. “She loves school, and has lots of friends. When she gets home, she video calls them on her iPad and plays Roblox with them too.

“She loves doing her makeup, especially eyeshadow. She did a rainbow not too long ago which she loved. Eleanor likes dancing and musical theatre. She’s never quiet. She enjoys new adventures and listening to Ariana Grande, and wants to go and see her live.”

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The impact of lockdown

“Coronavirus has had a huge impact on us. We’re already limited for activities we can do with Eleanor, and during lockdown many of these (like cinemas, bowling) have been closed. 

“Parks have been open, but none of the play equipment is suitable for Eleanor. I’ve learnt that there really isn’t enough out there to make things accessible.

“As a result, our days out have completely gone, and entertaining her became even more difficult. The things that we could do, we did so often, that they lost their spark. It was also difficult as we were missing interacting with people. I was petrified.”

How we helped

“When you have a disabled child, you don’t anticipate the little things going wrong, and how much it can cost to replace them. I’m so glad that services like Family Fund exist to help with these kinds of things.

“Over the years, their grants have provided bedroom furniture, a cot, a fridge freezer, a Lay Z Spa, and a specialised pram for Eleanor.

“All of the items help Eleanor in her day-to-day life. The pram in particular, we had just bought her one as a baby-but we were then told that she’d need one to keep her upright.”

How it’s made a difference

“The grant items have made life so much easier for us, and have taken some of the worry away for me as Eleanor’s mum.

“The grant items really do benefit us all, too, and they help to encourage her engagement with her environment.”

Find out how to apply for a Family Fund grant

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