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Families meet to share experience of cerebral palsy
9:30am Tuesday 17th April 2012 in Swindon Advertiser backs campaign to help young cerebral palsy sufferers to walk
From left, Jack Pike with mum Kylie, Robbie Davies and mum Kelly, and Natasha and Chris Ellis with Alycia
Alycia Ellis, Jack Pike and Robbie Davies all have cerebral palsy and need the same life-changing operation to enable them to walk.
The operation, called selective dorsal rhizotomy, is available at Frenchay Hospital in Bristol. However, two of the children have been refused the operation on the NHS, and the third’s family are waiting to find out whether he will be accepted.
Their families need to raise approximately £50,000 each for them to have the operation done privately, with some even considering having the surgery carried out in America.
This week, the Adver will be talking to each of the families to find out what they are doing to fundraise, how they feel about being refused treatment on the NHS and how the operation would change their lives.
IT IS a normal scene played out in McDonald’s every weekend – children tucking into their fast food and then playing with their free toys while their parents look proudly on.
But for the families of three children who met at the restaurant, in Great Western Way, on Sunday afternoon, their experience of family life can often be very different.
“It’s nice to know you aren’t the only person in this, we aren’t the only people.- Natasha Ellis
Alycia Ellis, Jack Pike and Robbie Davies all have cerebral palsy and their families are trying to raise money for an operation called selective dorsal rhizotomy to ensure they can live normal lives.
The Adver invited the children and their families to the restaurant so they could benefit from meeting each other, sharing experiences and lending support.
Alycia, six, of Abbey Meads, came in her wheelchair with parents Natasha and Chris, as well as her older sister Aaliyah, nine, and younger brother Corbin, four.
The family have started a £50,000 appeal to pay for the operation in the USA and are planning a number of fundraising events, including tackling the Three Peaks Challenge.
Natasha said it was useful to meet the other parents and thought there might be other children out there with cerebral palsy who might benefit from SDR but do not know it is available.
“Unfortunately in Swindon, parents do feel like there’s a big distance between us all, because I guess there’s nothing around that can put us in close contact with each other.
“And that’s what I want done, by getting in contact with other parents, so we can support each other.
“It’s nice to know you aren’t the only person in this, we aren’t the only people. When Alycia was first diagnosed, we thought we were entirely alone. And it was not until we saw the other children’s plights in the paper that we realised we aren’t alone.
“And it’s nice for Alycia to understand there are other children who need the same operation, so she doesn’t think she’s alone.”
Jack Pike, three, of Penhill, came on his walking frame with mum Kylie. As well as having cerebral palsy, epilepsy and a heart condition, Jack also aspirates food, meaning it goes into his lungs rather than his stomach.
He is fed through a tube into his stomach but he can eat food for pleasure, which he throws up later, and he was tucking into his French fries on Sunday.
Jack is too young for the NHS to decided if it will fund the operation, but the family have raised more than £17,500 so far to pay for the surgery themselves.
Kylie said it was good to meet other families in a similar situation.
“I have always felt left out,” she said.
“When you say to people my son’s got cerebral palsy, they say that means nothing to them. And when you say it’s brain damage, they say he doesn’t look like he has it.”
Robbie Davies, six, of Stratton, attended in his wheelchair with his mum Kelly.
Robbie’s family started fundraising for an SDR operation in the USA in 2010, but stopped when it became available at Frenchay Hospital, in Bristol.
In November, NHS Swindon said it would not pay for the £23,000 operation, so the family is now in talks with the NHS.
Kelly said: “It’s nice to speak to parents who are going through similar stuff to you. When you talk to people who don’t know what you are talking about, they haven’t got a clue.”
Kelly said it would be good to set up a support group, adding: “It’s about getting more people together, the parents and families who’ve got children with cerebral palsy, to share experiences and help each other.”
Jack alwyas wakes with a smile on his face
Three-year-old Jack Pike’s parents, Kylie and Gary, started fundraising for the SDR operation last year, in case the NHS refused to fund the £23,000 surgery at Frenchay Hospital. Kylie, 26, who has taken a year out of working at Asda to look after Jack, said the operation would change their lives.
I CAN’T explain a typical day, week, or month, as every day is different.
Jack has many problems, from epilepsy, an enlarged heart, a mini button feeding tube as well as his cerebral palsy.
This affects his lower limbs, but every morning Jack wakes up with a smile on his face. Jack is generally a very happy child, however there are times when he becomes extremely frustrated, as he has to sit and watch his older brother Kieran and friends play football and run around.
Jack always asks to play but obviously cannot keep up with the others as he crawls around on his knees and becomes extremely tired and his legs begin to hurt, so he ends up laying on the sofa.
He often cries at night when he has his splints on – they stretch his muscles, which hurts, and he only sleeps due to his medication. He has been through so much but it doesn’t seem to faze him, but I have never heard him scream more than when he had botox in his legs. It just made me burst out crying.
Looking at him, you wouldn’t know anything was wrong. He is such a happy boy. If the NHS were to fund this operation, it would change not only Jack’s life forever but our whole family’s.
It would give him the freedom that he dreams of, it would mean we would not have to carry him around – which he hates. It would give Jack the independence that every child deserves, building his self confidence and self esteem.
NHS won't comment on individual cases
WHEN the Swindon Advertiser contacted NHS Swindon on Friday to request an interview with the chief executive about selective dorsal rhizotomy this week, we were told by a press officer that they would be able to advise us on this on Monday.
Yesterday, the Adver contacted them again and were told that chief executive Jan Stubbings would not be available for interview this week but a statement would be provided.
When asked why the chief executive would not be speaking with us, we were told that this was because she would not be able to comment on any individual cases or add any additional information to that included in the statement provided.
We were also told that the decision to fund the operations was not a decision made by the chief executive but by a specialist commissioning group.
We were sent the following statement: Medical Director for NHS Swindon, Dr Liz Mearns, said: “NHS Swindon is committed to achieving the best possible health outcomes for all its patients.
Cases such as these are complex, and we have to take into account both the current clinical evidence available and individual circumstances.
“It is understandable that parents and families want the best for their children and loved ones and we respect their wish to pursue all potential options to secure funding for treatments.
“This procedure is not routinely funded by NHS organisations, but there is a process (which includes appeals) to allow individual funding requests to be looked into to determine if there are exceptional circumstances.
We cannot comment on individual cases. “Decisions on Individual Funding Requests always involve very careful consideration of a range of relevant factors by an experienced mix of clinicians and lay representatives (as part of a panel).
Every case is individual and we are unable to comment on particular cases.
The South West Specialised Commissioning Group will consider the appropriate criteria for treatment when it decides whether to commission services for this procedure. “Further work is being carried out by the South West Specialised Commissioning Group to consider commissioning services for this particular procedure across the region.”
Fundraising drive is in the bag
ABOUT 15 volunteers packed shoppers’ bags at Asda Walmart to help fund a operation which will allow six-year-old Alycia Ellis to stand on her own.
Alycia, of Abbey Meads, and her family are trying to raise £50,000 so she can have a life-changing operation in the USA which will help her to walk. On Sunday, her parents Natasha and Chris, as well as their family, friends, and colleagues, raised about £1,040 from packing bags in return for donations at the supermarket, based at the Orbital Retail Park.
There was also a notice making people aware of Alycia’s plight and inviting people to make donations.
While in the supermarket, the couple received calls from four anonymous donors offering £50 each. IF YOU would like to make a donation to any of the three families, or can help out in another way, they would love to hear from you. To help Alycia Ellis and her American Dream call Natasha on 07825 828265.
To help Jack Pike and his family contact Kylie on 07833 225411. And to offer your support to Robbie Davies and his family call Kelly on 07597 025452, or email@example.com You can also call the Adver newsdesk on 01793 501806.