Nine year old Scarlett Fish, who has spastic bilateral cerebral palsy, took part in Sparks’ Petra running-bikes pilot study at Valence School from September to December 2013.
Full of cheeky smiles and enthusiasm, she loves the freedom and independence the running-bikes give her, and continues to use them at every opportunity. Normally, Scarlett needs a wheelchair or powered chair for mobility.
Scarlett lives with her mum, Belinda, twin sister Emily and spends a lot of time with her dad and older sister, Jessica age 13.
Scarlett’s mum, Belinda, describes living with cerebral palsy and the joy the freedom of the running-bikes has given Scarlett.
“Scarlett and Emily were born at 32 weeks after I developed twin-twin transfusion syndrome during my pregnancy. They weighed just over 3lb and spent 8 weeks in special care. Scarlett is proud to say that she is the eldest, having been born just before Emily.
I realised early on that Scarlett’s development was not progressing at the same rate as Emily’s. She wasn’t able to sit up on her own or crawl, and her legs crossed over one another. When Scarlett was one, we had the official diagnosis of cerebral palsy.
Since then, I have had to give up work to care for Scarlett and deal with the continuous hospital appointments. Whilst Emily has become more independent, Scarlett’s development remains at around toddler level.
Scarlett cannot do the things that everyone else takes for granted; simple things like choosing to walk into a different room, or picking up something she’s dropped. It is hard, tiring work caring for Scarlett. I carry her up and down the stairs and lift her in and out of the bath and change her nappies. Scarlett can feed herself (a little messily!) and drinks with a beaker. She is great with washing her hands and loves to do things for herself when she can, saying ‘Me do it’. I give Scarlett medication 3 times a day to help relax her muscles and prevent spasms. During the night she calls me when she needs to be turned over, or to have her head put back on the pillow.
Having twins highlights the vastly difference experience the girls have of being nine year olds. Emily can have her friends over and loves gymnastics and bouncing on the trampoline. Scarlett’s school friends all live too far away to have round as Valence has such a wide catchment area.
Scarlett would love to join Emily for sleepovers at her grandparents but they can’t manage all her physical needs. Scarlett can only visit if her 13 year old sister Jessica is there to help with things like lifting and changing her nappies.
The girls do enjoy activities together like Lego, watching TV and going to Bluewater. Scarlett has particular love of cream and jam doughnuts from Greggs. At the moment they can’t agree on a tenth birthday theme – it’s Monsters University for Scarlett versus One Direction for Emily. Naturally I have to give attention to Scarlett, though we always try to make sure that Emily can do the things she loves too.
The running-bikes are the only thing I’ve known Scarlett to enjoy because she has the freedom she can never normally have stuck in a chair. Scarlett has difficulty using a walker as she leans backwards and her foot gets stuck underneath it, but with the running-bikes she can lean forward and move her legs.
“The running-bike is faster than a wheelchair and I can use my legs” explains Scarlett. “I run so fast. One time I ran down the corridor and my teacher couldn’t catch up!”
“We take one day at a time and I don’t think about the future too much, as I know I won’t be here to take care of Scarlett forever“ continues Belinda. “At Valence they are great at encouraging Scarlett to be as independent as possible. We’d love to see Scarlett have more opportunities to use the running-bikes. We always get involved with any medical research projects. If you don’t, things will never get any better.
All the children love the running-bikes, they don’t have much to look forward to, but they can’t wait for the freedom the running-bikes give them. Not one person could watch those children and not want them to have that opportunity. If we could use them here we would. I would take the girls to the prom, and they could be on the move together, with Emily on her bike.”
Scarlett has the last word, “you’d have to chase after me mum”.