Mira is like any other child
She enjoys watching Peppa Pig, train rides and going to the park with her family.
The eight-year-old can be heard most days shouting ‘Faster, faster’ as she zooms up and down a ramp into the garden at her home.
Mira has very complex needs. She has quadriplegic cerebral palsy and epilepsy, and has no use of her legs at all. She is tube fed and has an internal medicine pump fitted, one just under her ribs, which sends medicine via a tube into her spine. She can’t sit up or walk and her vocabulary is limited to about 100 words.
Despite this, Mira shares her enthusiasm for life with her adoptive parents, Revd Simon and Kate, as well as her brothers Sam (21) and Isaac (17), and her sisters Hannah (19) and Cola (10).
Until recently, days out or even simple trips to the shops were pretty much out of bounds for the whole family as they balanced Mira’s mobility needs.
All this changed when a new, specially-built bike arrived.
Mum, Kate, takes up the story:
Mira is a complex little monkey. A real adrenaline junkie. She loves anything that goes fast.
The NHS is quite strict and deemed she could only have a buggy and she can’t have a motorised chair because of her seizures.
What do you do with a child that can’t walk and she’s too heavy to carry?
We were really limited to only being able to get some fresh air by going in the car, but Mira would scream in frustration in the buggy, and in the car she would get extremely grumpy very quickly.
Family bike rides - so essential for our physical and mental wellbeing - were simply impossible, as we had no way of Mira travelling with us.
When the bike first arrived, it was just amazing.
Mira has a severe learning disability, cognitively she’s about 18 months to two years old and so she gets very excited about things. The first time she got on the bike, she just loved it and was shouting ‘More bike, more bike, more bike!’
When Kate approached Clergy Support Trust about a health grant for the wheelchair bike, the Grants and Services Officer arranged for an occupational therapist to visit and see if the bike was the best option for Mira’s needs.
Following this assessment, Clergy Support Trust subsequently provided a generous Health Grant of £5,000 towards the cost of the wheelchair adapted bike, with other charities and Mira’s family paying contributions to bring it up to the total cost of £7,658.
Once we’ve practised more with the bike, we’re really looking forward to being able to use many of the cycle paths around where we live.
We might even get as far as the local railway station, where Mira’s favourite thing in the world is to ride up and down in the disabled lift. She calls it an ‘up one, down one’ and she loves pressing the button to operate it and watching the trains coming in and out of the platforms.
You’re never going to be able to get something like Mira’s bike on the NHS. We made a decision to live on a stipend, and so we were never going to be able to afford such things.
But the bike is such a blessing for us. God doesn’t just know what we need to get by, but also what will help our family life. As part of Simon’s calling and as part of remembering that God has got our backs, he’s also got the best interests of all our children as well.
Thanks to the bike and the help from Clergy Support Trust, we can now access some really brilliant places, in a way that everybody genuinely enjoys and that also benefits our physical and mental health. The whole thing is amazing.
*Due to Mira being adopted, her parents have requested that we do not share her identity online.