Desperate parents forced to beg strangers for cash to help seriously ill kids
11/25/2019 To discover your child has a serious medical condition is every parent’s worst nightmare, but if there are no options on
the NHS, it becomes an even more heartbreaking and desperate one.
And as the vast majority of people don’t have enough savings for private operations and aftercare, every day thousands of families are fundraising online to save their poorly children.
GoFundMe, one of a number of crowdfunding sites, has recorded a 67% year-on-year increase in the number of pages set up for medical conditions. While this figure includes adults seeking donations to pay for treatment, it shows the scale of a growing issue.
A poignant Channel 4 documentary, Save My Child, which airs on Tuesday shows that finding the money can leave many parents feeling stressed and exhausted.
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For six-year-old Pranav’s mum Usha, 35, her battle to give her son any chance of a normal life has been particularly tough because of the amount of money involved – a staggering £100,000.
Pranav has cerebral palsy and it has damaged the part of his brain that controls movement so he can’t walk.
Last year, the NHS started to offer some children with cerebral palsy pioneering surgery. Sadly, Usha and her husband Ravi, who live in Milton Keynes, Bucks, were told Pranav didn’t meet NHS criteria for free treatment.
Specialists believed there was not enough evidence children as severely affected as him would benefit.
“It was devastating,” says Usha. “We were very upset as we had been planning this operation for years.”
After looking into private treatment, the couple realised if they were to make Pranav’s dream to walk come true, their best option was to fly to America to see the doctor who pioneered the surgery.
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Of course that would come at a price. To have the surgery would cost £50,000, a figure that doubles once you add on £50,000 for physiotherapy afterwards.
The eye-watering sum was money the couple most definitely did not have.
“We were anxious but fundraising was our last resort,” admits Usha. “There was never any question of us not doing it though. We had to if we were to give Pranav a quality of life.”
In June 2018, the couple started to try to raise the initial £50,000 for the surgery.
They spent the next eight months frantically organising charity events. In the first few weeks, they had raised £21,000 from their own savings and some small events.
But it was the donations of total strangers that blew them away.
“Their generosity amazed me,” says Usha.
Although they had a great start, the couple soon found fundraising can be incredibly difficult, even with the help of former England bowler Matthew Hoggard, who offered to give up his time for free to run a fun day.
No one imagined hardly anyone would turn up.
“That was a big disappointment,” Usha says. “We had put so much effort in but we couldn’t pull in the crowds.”
She also began to feel she was spending so much time organising fundraisers that she was taking her eye off the ball when it came to Pranav.
“When we started fundraising, it was complete chaos,” she explains. “I felt so guilty that I wasn’t doing things that I had done in the past with him but it was a helpless situation.”
Yet while there were numerous occasions when they felt at the end of their tether, kind donations – including £1,800 from an old classmate of Ravi – spurred them on. By April this year, they had raised enough to fly to America.
Wonderfully, the operation was a resounding success.
Although the couple still have a long way to go to pay for the intensive aftercare, Pranav’s progress has been incredible. “He is doing amazingly,” says Usha.
“Before surgery, he would struggle to walk 10 steps, even with a walker, but now he can do more than 30 metres. We are really proud of what we have done.”
Their desperate story is echoed around the UK. Also featured in Channel 4’s documentary is 15-year-old Mia and mother Jo, who live in Northern Ireland.
Mia, suffers with scoliosis, which means her spine is curved and she was forced to wear a painful body brace 23 hours a day to slow curvature.
Although the NHS does a tried and tested operation, Jo feared the 12-month waiting list would come too late for Mia.
“Her spine is already sitting on one lung,” said Jo at the time. “If Mia continues the way she is, it will crush both lungs. If she doesn’t get surgery, it will kill her.”
Like Usha, she did some research and discovered a pioneering operation called VBT was available in Turkey. But again it came at a price – £32,000.
Jo set up an online donation page and while people donated, it was not enough.
Prepared to put her business up for sale, Jo and her family then spent every spare hour organising supper evenings, a fun run and events to raise funds.
“It’s heartbreaking we’re having to fundraise to end this nightmare,” said Jo.
But her perseverance also paid off and Mia flew to Turkey.
Within two months, Mia’s curvature had straightened to just five degrees. “I am so grateful for support from around the world,” says Jo.
“I want to thank everyone,” adds Usha. “My advice is, never give up. If you have to raise the money, you must. It has been challenging, but to see your child’s progress is so worth it.”
- Save My Child airs on Tuesday at 8pm, C4
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