A Runcorn mum is aiming to raise £1,000 per week to help her eight-year-old daughter learn to walk.
Ella-Rose Spencer has Down’s syndrome and West syndrome which causes epilepsy.
She spent the first 11 weeks of life in an intensive care unit before undergoing an operation to fix a hole in her heart. She was then diagnosed with visual developmental delay and at nine months started to have infantile spasms which are now controlled through medication.
Mum Emma Carmichael (45) who also has a 14-year-old son Bailey, is fundraising for a £29,000 Innowalk – an innovative dynamic standing device, that enables movement and physical activity for children.
Emma said: “We have had a loan of the equipment for the last couple of weeks and Ella-Rose is like a different child. She’s already holding herself more upright – it’s done wonders for her muscle-tone, and she smiles and giggles the whole time she’s in it.
“£1000 a week sounds like a lot but so far, one way or another we have managed it so far! We are always grateful for donations or people who choose to take on sponsored events for Ella-Rose to help get her moving.”
The family has already raised almost £10,000 through sponsored challenges, auctions and more. Wreckers Raffles is currently offering tickets to win a holiday in Ibiza in aid of Ella-Rose and a local running club has pledged to hold events for her.
“Ella’s time spent in hospital and having various treatments during the first year of her life meant she bypassed all her fundamental developmental stages,” added Emma.
“However, I could see her ability and how much she loved to be called clever when she learnt, so in January 2019 Ella began targeted training therapy with The Movement Centre.
“Within six months Ella went from having little head control to nearly all her upper body control. Her development was amazing and she continually beat her targets.
“Unfortunately this also resulted in Ella’s kneecap being dislocated and fused out of place and she underwent surgery beginning of 2021. This was a complete success and meant that in theory, nothing was stopping Ella beginning to walk now.
“But since then, Ella’s physiotherapy input for recovery from her operation has been limited. She won’t tolerate a standing frame anymore due to the trauma and pain it caused previously.
“Then we discovered the Innowalk, a piece of equipment which would give her the same chances in life as any other child. It supports her body while getting her legs moving, and to gradually get into the standing position while her feet and knees are doing the walking. The ultimate dream is to one day see Ella walk, and I know she can do this if she has the right resources.”
Last month Emma and her mother Ann Carmichael (68) took on Tree of Hope’s 25K challenge, and they are hoping Ella-Rose can complete 25km on her Innowalk before they have to return it.
Ella-Rose’s family is being supported by children’s charity Tree of Hope which helps families fundraise for children with healthcare needs which cannot be provided by the NHS.
Tree of Hope head of marketing Georgina Lowry said: ‘We’re really pleased to be supporting Ella-Rose’s fundraising and delighted to hear that her family are so well supported by friends and their community. We wish the family all the best with their ongoing fundraising and are here to support however we can.’
To sponsor Ella-Rose, visit https://www.treeofhope.org.uk/
