Boy With Cerebral Palsy Writes Heartbreaking Letter To David Cameron After NHS Pulls Funding For Treatment

Boy Writes Heartbreaking Letter To David Cameron Pleading For Treatment Funding
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A boy with cerebral palsy has written a letter to David Cameron pleading for his help after the NHS pulled funding for his spinal surgery and aftercare.

Ben Baddeley, 11, from Staffordshire, was booked in to have major spinal surgery on the NHS to help him walk again, but five days before his appointment his family were informed the funding for the operation had been pulled.

Ben was able to go ahead with the operation thanks to an anonymous donor who covered the £11,440 cost, but he now requires a further 18 months of treatments at the cost of just under £2,000 every month.

However, Ben's treatment will stop on 28 March if the family fail to raise enough funds to finish his rehabilitation.

Ben Baddeley

"I really hope you get this letter because my family really needs help," Ben wrote to Cameron.

"Why can't the NHS pay for my treatment? Do you know why?

"Can you please fix it?"

Ben explained in his letter how he had an operation, which was funded by donations, but he doesn't understand why the NHS won't pay for his follow-up treatment.

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Ben wrote: "It's really hard work for my mum and dad and I don't think it's very fair.

"I wanted to ask you if you could sort things out so I can get my rehabilitation paid for by the NHS. Can you do that?

"We are always busy fundraising so we miss out on family time quite a lot and that's a bit sad for us.

"I really hope you get my letter and I really hope you will help me."

Ben, who has spastic diplegia cerebral palsy, was put forward for the spinal surgery that would reduce the pain when he walked, under the NHS three years ago.

His mother, Amy Baddeley, said the NHS took Ben through two years of pre-operations tests, scans and body conditioning in preparation for his surgery.

However, five days before the operation the Baddeley family received a letter (pictured below) informing them that to continue with Ben's surgery there was an outstanding balance of £11,440 of which the NHS could not fund.

"Ben's consultant had stopped all of Ben's pain medications a week before his surgery date because it wouldn't have been safe for Ben to have major spinal surgery with the amount of medication in his system," Mrs Baddeley explained.

"So at this point Ben was in agony and we simply couldn't leave our son in that amount of pain, he was at this point telling us that he wanted to go to sleep and not wake up because it hurt so bad."

Mrs Baddeley set up an appeal online and an anonymous donator paid the £11,440 direct to the NHS, meaning Ben's surgery was rescheduled at the QMC in Nottingham and went ahead.

"Ben went into hospital a wheelchair user and walked out of hospital two days later, which to us was nothing short of a miracle," his mum said.

"Two days after we got home, the NHS contacted us to inform us that they now consider Ben's surgery to have been 'private' and now will not fund any of his rehabilitation, which costs just under £2,000 every single month."

Ben's mother said the family have been raising funds for the past year, but they have now run out of donations.

"Ben has just seven treatment sessions left, his last session is on the 28 March if I fail to raise the funds," she said.

"This is a massive blow to Ben and leaves him with a huge possibility of becoming wheelchair bound once again.

"My son has been shown a better quality of life and he has worked hard with his rehabilitation, now because fundraising is getting near impossible I'm being forced to take that life away from my little boy."

For more information on the family's appeal, visit their Facebook page Help Ben Walk Without Pain. The family also have a GoFundMe page for donations.

Mums Speak Out About Lack Of Cerebral Palsy Research
(01 of06)
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"My daughter has cerebral palsy. Despite the happiness she exudes, Maya openly shares her frustrations about her daily challenges with us. She wants to use the bathroom by herself, brush her own hair, dress herself, drink from an open cup, sit on the floor without falling. Recently she shared with us that someday she hopes to walk even if just for part of the day. She is eager to help herself make these advances. Unfortunately, the current therapy protocols will not help her meet many of her goals. None of the current available treatments for CP are estimated to provide more than an average 4 to 10 percent gain for the individual, per Iona Novak, Head of Research at CP Alliance Australia. In Maya’s lifetime, parents of kids with CP as well as adults with CP should have the opportunity to choose therapies or interventions that will provide meaningful change in mobility and quality of life."—Michele Shusterman, CP Daily Living; mom to Maya, 6, who has cerebral palsy (credit:Michele Shusterman)
(02 of06)
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“These days, a diagnosis of cerebral palsy is pretty much like having the medical community shrug their shoulders. They know what it is, and can alleviate some of the symptoms, but there's definitely an attitude of 'There's nothing we can do.' My son is smart and sassy, but his body just won't comply. If he makes even a small gain in therapy, he uses it to the best of his advantage. Imagine what he could do if if we were able to actually improve his condition.”—Katy Monnot of Bird on the Street; mom to Charlie, 6, who has cerebral palsy (credit:Katy Monnot)
(03 of06)
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"Last year, my daughter participated in the Preemie Growth Project, which was about replenishing minerals necessary for a healthy brain. The research looked promising based on the results of the children participating in the study. The woman behind the project tried relentlessly to get the attention of medical professionals and researchers, yet even with the results, nobody seemed willing to listen. Eventually we stopped participating for a couple of reasons: the cost, and the lack of support from professionals. And the project was working; slowly we saw our daughter with cerebral palsy improve, as if her body was "waking up." Just a few days ago my daughter was described as a "superstar" by her team at Mayo clinic. She is determined to walk, to move, to live! But what a difference it would make if someone was willing to fund research, to give her a try outside of putting her under the knife to lengthen one more muscle."—Ellen Stumbo of These Broken Vases; mom to Nina, 7, who has cerebral palsy (credit:Ellen Stumbo)
(04 of06)
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"The current surge in autism research is heartening; I'm grateful so many people want to help autistic people like my son Leo. But we have to remember that all kids with disabilities deserve that same attention, deserve that same research funding, deserve to live the best lives possible."—Shannon Des Roches Rosa of Thinking Person's Guide to Autism and Squidalicious; mom to Leo, 12, who has autism (credit:Shannon Des Roches Rosa)
(05 of06)
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"It's disappointing to see so little interest in researching the causes and possible treatments for cerebral palsy. Most of the available treatments focus on the symptoms, but orthopedic procedures can't fix circuits that are misfiring in the brain. I'm a former electric power engineer, and I know that propping up a pole won't get the power back on if the wire is lying on the ground! Discovering what makes the brain work and how to help it repair itself has implications way beyond the cerebral palsy community, as well."—Andi Sligh of Bringing the Sunshine; mom to Sarah Kate, 10, who has cerebral palsy (credit:Andi Sligh)
(06 of06)
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"With an adult who has a stroke, say, it's easy to imagine the function they had and the function they could have again with proper treatment and care. But with a child, it's much easier to brush it off as: 'They were born that way, so that's the way they'll always be.' Parents of kids with CP have very little time and money to address this issue on a national scale. Instead, many of us are paying thousands, if not tens of thousands, every year to do what medical science refuses to: find treatments that work."—Shasta Kearns Moore of Outrageous Fortune; mom to Malachi, 3, who has cerebral palsy (credit:Shasta Kearns Moore)