Four-year-old needs £50k for life-changing surgery
Lucy's parents have set the fundraising goal for a second time, after her twin brother had the same surgery in 2020
A Surrey-based family is trying to raise £50,000 by July, to fund surgery and specialised physiotherapy for her daughter with cerebral palsy.
Twins Lucy and Matthew Johnston, aged 4, from Ash, were both born with cerebral palsy.
The family raised £50,000 for Matthew to have selective dorsal rhizotomy (SDR) surgery in October 2020. Previously reliant on his wheelchair, he now uses his walker instead most of the time and is able to walk a few steps unaided.
Lucy’s medical team has now given the go-ahead for her to have the same operation. But it won’t be funded by the NHS, so the family need to raise a further £50,000 - £37,000 for the surgery, and the rest for ongoing specialised physiotherapy.
Speaking to Greatest Hits Radio, Lucy's dad David Johnston who's a judo instructor, described Lucy as "the happiest disabled child in the world", "always with a smile on her face", and told us how her condition affects Lucy:
"She can't do things like getting up to walk around, she needs help going to the toilet, naturally, because she can't pull herself up, she needs help getting dressed, for example.
"During the night, she may roll over and put herself in a position where she's then uncomfortable, or if the bed covers come off she can't pull them back up like you and I would be able to. So she wakes up easily 4 or 5 times in a night.
"There's a lot of things that she needs help with, so it definitely affects her from the moment she wakes up to the moment she goes to bed."
Lucy's Dad David also told us what it would mean to give Lucy the same chance they've been able to give her twin brother Matthew:
"As parents you want to make sure that what you give to one child, you can offer to the other child. Even though they are at different levels of the spectrum in terms of their ability now - Lucy's condition is more severe than Matthew's - but we never want Lucy to grow up and say to us 'Daddy, why did Matthew have the surgery and I didn't?
"It will be good for Lucy and for the whole house, if she can do more and be more independent. When we try to do things for her, she wants to do it, but we know she can't and therefore she gets very frustrated that she can't do the same things as Matthew. So we want to give her the same opportunity as Matthew and hopefully with the surgery she will be able to do all those things."
"We hope Lucy can have her operation at the end of July so the clock is ticking"
The family have already raised almost £15,000 from a garden party and generous donations from well-wishers, and have several other events in the pipeline.
They have already sold out 165 tickets for a charity ball to be help at the Casa Hotel in Yately in March, and are appealing for raffle prizes to help boost fund at the event.
Lucy's twin brother Matthew is planning a sponsored walk with some of his classmates at Badshot Lea Infant School, and one of his school pal’s dads is planning a 100-mile sponsored bike ride.
Mum Nicki said: ‘We hope Lucy can have her operation at the end of July so the clock is ticking.
Her brother has come a long way since he had his operation and now that she has been cleared as strong enough to have hers, obviously we want the same for her too.’
‘She is in quite a lot of pain and the operation will make her more comfortable. It will also mean she can be a little more independent – doing things like being able to lift herself onto the toilet, and be able to play with her friends more easily.’
‘Lucy is the happiest child around, her laugh is infectious and she makes everyone she meets smile. We just want to give her an opportunity to live her life to the absolute fullest and make her beautiful smile even bigger.’
Fundraising
The family is being supported by children’s charity Tree of Hope which helps families fundraise for children like Lucy with healthcare needs and provides charity status to benefit from gift aid, corporate support whilst also providing donor reassurance.
Gill Gibb, Tree of Hope CEO said: ‘We’re delighted to be helping the Johnston family with their fundraising again. They have already done an amazing job fundraising for Matthew and we have no doubt they will do the same for Lucy.’
The family is accepting donations via the Tree of Hope's website, where - at time of writing - £14,517 have so far been raised.
According to a statement by the charity, 7.5% of all donations will be allocated to the general charitable purposes of Tree of Hope to cover their core operating costs.