Ella-Rose Spencer

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My daughter Ella-Rose is 8yrs old, she has a dual diagnosis of Down syndrome and West syndrome. We currently don’t know why she’s unable to walk but we believe we have found a piece of equipment to change this for her.At 4mths old Ella underwent open heart surgery which left her fighting for her life for the 2nd time since birth. After a long hard battle in ICU she was finally discharged 3 months later. Not long after this she was diagnosed with a visual development delay and then at 9mths old began having infantile spasms (a rare form of epilepsy), the initial treatment for this was quite intense and it took us till after she turned 1 to get her seizures under control. Ella’s first year of her life meant she bypassed all her fundamental developmental stages.However Ella’s development did start to improve just at a much slower pace than her peers. I could see her ability and her love to be called clever when she learnt, so in January 2019 Ella began targeted training therapy with the movement centre.Within 6mths Ella went from 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. She underwent surgery beginning of 2021, this was a complete success and meant nothing was stopping Ella beginning to walk now.In the last 2yrs 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 a piece of equipment which would give her the same chances in life as any other child, this is called an Innowalk, this will give Ella everything she needs to stop her knee from seizing. It supports her body while getting her legs moving. It allows her to gradually get into the standing position while her feet and knees are doing the walking.In the last 2 weeks we were lucky enough to trial this and once again I was blown away by Ella.What she limits in communication skills she makes up for in strength and determination. The target was 5-10mins on a speed of 30-40, 3-4 times a week.But Ella was more than happy to go in daily and was quickly achieving 20mins. She ended her last day on over 25mins with a speed of 44 and a much higher incline than what we expected. But it’s also the other things that have changed, Ella’s moods have been lovely and giggly, she’s chattier and saying more words and gone from struggling sitting to holding herself for 10mins.If this is what she can do in just 2 weeks, the possibilities are endless if she owns one for herself.The ultimate dream is to one day see Ella walk, I know she can do this if she has the right resources. So please share our story and hopefully it can reach people who are in a position to help

If we exceed target in anyway this will go towards creating outdoor access to her hottub all year round for therapy

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