:00:28. > :00:34.This is Abigail. She's always hated being disabled. Every single year,
:00:35. > :00:44.Christmas and birthday lists the top one is not to be disabled.
:00:45. > :00:45.
:00:45. > :00:48.she has ever wanted is to be able to walk. She crawls on the floor
:00:48. > :00:52.and she really doesn't like crawling on the floor, at nine
:00:52. > :00:55.years old she wants to be upright like we all are. Now her dream
:00:55. > :00:57.could be about to come true. Abigail is to undergo a radical
:00:57. > :01:07.surgical procedure which has helped hundreds of children with cerebral
:01:07. > :01:12.
:01:12. > :01:19.palsy to walk. Everything is at stake. The last six months have
:01:19. > :01:23.been... Sorry. Very stressful to get to this point but this is what
:01:23. > :01:33.Abigail wants. This is what she's dreamed for and until we found out
:01:33. > :01:33.
:01:33. > :01:39.about this there was no hope. At To find that hope, Abigail's family
:01:39. > :01:42.has had no other choice than to travel to the US. Here at the St
:01:42. > :01:49.Louis Children's Hospital, one man has spent nearly 25 years refining
:01:49. > :01:52.a pioneering technique. I have done over 2,000 children from some 43
:01:52. > :02:02.countries and we deliver and we improve the quality life of the
:02:02. > :02:05.
:02:05. > :02:08.There are hundreds of children across the UK who could benefit
:02:08. > :02:18.from this surgery but the NHS has been reluctant to fund or develop
:02:18. > :02:20.
:02:20. > :02:27.The NHS has treated families with children with cerebral palsy
:02:27. > :02:30.absolutely terribly. But things could be about to change. Beau
:02:30. > :02:37.Britton is hoping to become the first child to undergo the
:02:37. > :02:41.groundbreaking surgery in this He's unable to stand or walk
:02:41. > :02:44.independently on his own. So I am hoping he will be able to gain a
:02:44. > :02:50.little bit more freedom and a little more independence in his
:02:50. > :03:00.every day life. This is the story of two children, each with a dream
:03:00. > :03:11.
:03:11. > :03:21.of walking unaided for the first It's summer 2010 and Abigail's
:03:21. > :03:25.
:03:25. > :03:28.sister is raising funds to help And Abigail is lending a hand.
:03:28. > :03:38.Abigail's just an amazing child, she is talkative she is sympathetic.
:03:38. > :03:43.
:03:43. > :03:45.Her sense of humour is incredible. Abigail was born 14 weeks early by
:03:45. > :03:51.emergency Caesarean when her mother Carrie developed liver failure. She
:03:51. > :03:54.weighed just one pound, three ounces. When I think back to
:03:54. > :03:57.looking at her in her incubator and wondering what sort of person she
:03:57. > :04:07.would be I never dreamed she would have the Her character is just
:04:07. > :04:12.
:04:12. > :04:17.She has a real thirst, a real hunger for life. Her premature
:04:17. > :04:22.birth left Abigail with plastic cerebral palsy. It's made every
:04:22. > :04:28.step a struggle and her life one long fight against disability.
:04:28. > :04:38.feel lonely. I feel angry about it sometimes. I feel cross and I want
:04:38. > :04:47.
:04:47. > :04:50.I don't really like being defeated by illness. I don't think you are
:04:50. > :04:54.defeated because every illness you've had you have got better from,
:04:54. > :04:57.haven't you? Yes. At her home in Bradley Stoke on the edge of
:04:57. > :05:03.Bristol, Abigail depends on help from her family for nearly
:05:03. > :05:09.everything she does. She needs special transport to attend her
:05:09. > :05:16.local primary school. And she has an assistant alongside her
:05:16. > :05:21.throughout the day. Good girl, your spelling is fantastic today, you're
:05:21. > :05:24.on fire. I only got nine out of ten. She also helps Abigail with her
:05:24. > :05:27.physiotherapy. Lovely walking Abi, well done. I've known Abigail now
:05:27. > :05:31.for five years since she joined school. She is the most loveliest
:05:31. > :05:41.little girl in the world. Let's see how long you can hold your balance
:05:41. > :05:41.
:05:41. > :05:46.for. Are you ready? OK, are you going to count in Spanish? Unos,
:05:46. > :05:49.dos, tres. My wish for her is that following this operation she can do
:05:49. > :05:52.all those things she yearns for. The operation Abigail faces is
:05:52. > :05:54.called selective dorsal rhizotomy or SDR. It involves testing which
:05:54. > :06:02.spinal nerves are causing the stiffness and painful tension in
:06:02. > :06:05.the legs and then cutting the roots. Leave this one. Cut number two.
:06:05. > :06:08.original basic SDR procedure has been around for years but there
:06:08. > :06:18.have been concerns it is too invasive and risks causing spinal
:06:18. > :06:18.
:06:18. > :06:25.So here at the St Louis Children's hospital in Missouri, Doctor TS
:06:25. > :06:28.Park and his team have spent years improving the SDR technique.
:06:28. > :06:36.made it basically much less invasive and as a result we can use
:06:36. > :06:39.this operation on older children so we can benefit more patients.
:06:39. > :06:47.Park has so refined the procedure he can now perform up to three
:06:47. > :06:50.operations in a day with remarkable results. The big advantage of this
:06:50. > :06:53.surgery is if the child or anybody has spasticity they cannot do the
:06:53. > :07:03.regular exercise because as they move fast their muscles get tighter
:07:03. > :07:07.
:07:07. > :07:13.This procedure, rhizotomy, is the only procedure that can reduce
:07:13. > :07:17.spasticity permanently. But Dr Park's version of SDR has not been
:07:17. > :07:22.used in the UK and parents say few are told about it by the NHS.
:07:22. > :07:25.Abigail's family found out about it from a friend. I couldn't believe
:07:25. > :07:29.there was something that could change our lives so dramatically
:07:29. > :07:34.and we're not doing it here. I can't fault the treatment Abigail
:07:34. > :07:37.has received from the moment she arrived into this world. It's been
:07:37. > :07:40.incredible but we just want the best for our daughter and if that
:07:40. > :07:45.means carting her across the Atlantic to give her a better
:07:45. > :07:48.future and a more independent life then that's what we're going to do.
:07:48. > :07:51.More than 70 children like Abigail have travelled to St Louis from the
:07:51. > :08:01.UK, each raising around �40,000 for the operation and aftercare in
:08:01. > :08:05.
:08:05. > :08:08.For Beau Britton, from Kelly Bray in Cornwall, everything rests on
:08:08. > :08:13.the operation coming to the UK. How's your foot feeling in that
:08:13. > :08:19.one? Is that OK? His parents are desperate for him to have the SDR
:08:19. > :08:24.procedure. He's unable to stand or walk unaided. He needs splints to
:08:24. > :08:30.walk with his little walker or with quadra-pods. With aid he can do a
:08:31. > :08:33.short distance of walking but it's very laboured, it's very intense.
:08:33. > :08:39.Basically what we're hoping is that by having the selective dorsal
:08:39. > :08:49.rhizotomy it will enable him to stand hopefully independently.
:08:49. > :08:50.
:08:50. > :08:52.Abigail, Beau was born prematurely. There was no particular reason why,
:08:53. > :08:56.he just started spontaneous labour, and he sustained a bilateral bleed
:08:56. > :09:02.in the brain, we believe during the birth, and was diagnosed at three
:09:02. > :09:07.weeks with bilateral brain damage. Beau defied the doctors' initial
:09:07. > :09:15.fears that he would be unable to walk at all. That was the worst
:09:15. > :09:18.case scenario. As you can see he's actually a lot better than expected.
:09:18. > :09:28.And we've been really lucky that he's managed to achieve a lot of
:09:28. > :09:32.
:09:32. > :09:35.the goals in life even though a bit slower than somebody else. It was
:09:35. > :09:39.only when Beau started at his local primary school that he realised how
:09:39. > :09:42.much tougher life is for him. came home one day and was very
:09:42. > :09:45.upset because he couldn't play football and he said, Why can't I
:09:45. > :09:49.play football, followed by Why can't I run, why can't I walk and
:09:49. > :09:55.it was one of the first times we've sort of had the conversation with
:09:56. > :09:59.him. He understands entirely about cerebral palsy and brain damage and
:09:59. > :10:02.what happened when he was a baby, and we've been very honest and talk
:10:03. > :10:06.all the way through it. We're not expecting a magic wand, but we do
:10:06. > :10:12.hope that he will be able to one day stand up, and walk even with
:10:12. > :10:17.aid, more comfortably. So why hasn't Dr Park's procedure been
:10:17. > :10:27.available in the UK? NICE, the National Institute for Health and
:10:27. > :10:28.
:10:28. > :10:31.Clinical Excellence, publishes guidance for the NHS. In 2006 it
:10:31. > :10:36.gave only a guarded assessment of SDR. Parents claim that the NHS has
:10:36. > :10:39.all but ignored the US operation. It's like they are putting up a
:10:39. > :10:44.brick wall straight away and it's just not being brought to people's
:10:44. > :10:48.attention. They think that they know best about their treatments,
:10:48. > :10:57.and they don't want to support us, to get our children to be able to
:10:58. > :11:00.live a better life after SDR. Autumn 2010 and things could be
:11:01. > :11:06.about to change here at Frenchay Hospital in Bristol the first steps
:11:06. > :11:11.to bring Dr Park's procedure to the UK are being taken. Kristian
:11:11. > :11:21.Aquilina is a consultant neurosurgeon. He's been appointed
:11:21. > :11:22.
:11:22. > :11:32.to develop the operation. He trained in the new SDR technique in
:11:32. > :11:32.
:11:32. > :11:35.America and has studied Dr Park at work. I must say the affect it has
:11:35. > :11:39.on children is quite remarkable. It clearly does make a huge difference
:11:39. > :11:41.in the way they walk, in the way they can carry themselves and also
:11:41. > :11:45.because they become more confident in their general well-being.
:11:45. > :11:48.for the procedure to work there has to be intensive aftercare and the
:11:48. > :11:54.funding is not yet in place. surgery itself is not particularly
:11:54. > :11:56.expensive. It's fairly basic neurosurgery, what may be a little
:11:56. > :11:59.more expensive is the physiotherapy and the long-term rehabilitation
:11:59. > :12:02.they need. These doubts over funding means it could be months
:12:02. > :12:04.before the first operation can take place. Too late for Abigail but I
:12:04. > :12:10.still think thousands upon thousands of people will benefit if
:12:10. > :12:16.this is one day available here. the meantime, children like Toby
:12:16. > :12:19.Cox, from Bristol, are proving the worth of Dr Park's procedure. Five
:12:20. > :12:28.months after Toby's operation in the US, Abigail is paying a visit
:12:28. > :12:33.to see what she can expect. Look at your legs go. Oh my goodness me.
:12:33. > :12:38.That is quite incredible. He hasn't used his wheelchair for weeks and
:12:38. > :12:46.weeks and weeks. During the day at school he walks everywhere. You
:12:46. > :12:50.show Abigail how tiny your little scar is. Go on Toby. Oh my goodness,
:12:50. > :12:53.that's the tiny little cut that they make and that's the bit that
:12:53. > :12:58.has changed Toby's life forever. Toby said things are a lot easier
:12:58. > :13:01.when you are not tight. We can't understand how he feels but just
:13:01. > :13:11.saying that makes you understand that everything everyday was so
:13:11. > :13:17.
:13:17. > :13:21.difficult for him now it is that It's December 2010 and Abigail's
:13:21. > :13:31.family have made the long trip to the children's hospital in St Louis.
:13:31. > :13:34.
:13:34. > :13:44.The operation will take up to five hours and Abigail will stay in
:13:44. > :13:45.
:13:45. > :13:53.hospital for five days. She'll be really sleepy. She will have a lot
:13:53. > :13:58.of medicine on board. Dr Park will be operating in a small area close
:13:58. > :14:02.to the end of Abigail's spinal cord. X marks the spot. Talia if you're
:14:02. > :14:04.going to say goodbye you need to do it now. She knows exactly what the
:14:04. > :14:08.procedure involves and what it could mean for her chances of
:14:08. > :14:12.leading a more normal life. This is going to be the start of the rest
:14:12. > :14:17.of your life. The start of being less disabled than you are now.
:14:17. > :14:27.It's what we've wanted. It's what you've always wished for. It's not
:14:27. > :14:33.
:14:33. > :14:40.a time for being sad. It's a time to celebrate the rest of your life.
:14:40. > :14:50.Likes will guide you are home and ignite your bones... And you will
:14:50. > :14:59.
:14:59. > :15:03.During Abigail's operation, Dr Park will cut the sensory nerve roots
:15:03. > :15:11.that are causing the spasticity in her legs. To do that, he has to
:15:11. > :15:17.remove a section of bone from her spine. What sets Dr Park's
:15:17. > :15:20.procedure apart from other SDR operations is the amount. Where
:15:20. > :15:25.other surgeons may take bone from several vertebrae, Dr Park will
:15:25. > :15:28.only remove it from one. It's less invasive but there are still risks.
:15:28. > :15:31.This operation is more technically demanding because we expose a very
:15:31. > :15:41.small area about an inch long area and there are spinal chords, a
:15:41. > :15:46.
:15:46. > :15:55.bunch of nerves, so if anything Dr Park then divides the nerve
:15:55. > :16:04.roots into three to five rootlets The responses from the muscles tell
:16:04. > :16:07.him which rootlets are causing the spasticity and need to be cut.
:16:07. > :16:10.We're hoping today's operation goes as well as it possibly can. That
:16:10. > :16:20.the nerves that are causing the spasticity are the ones that are
:16:20. > :16:21.
:16:21. > :16:24.We don't want any other ones cut. We don't even want to go there, but
:16:24. > :16:28.obviously that is the risk you take by being here, and that is why we
:16:28. > :16:38.have to trust Dr Park and his expertise of having refined this so
:16:38. > :16:38.
:16:38. > :16:48.Five hours later, and the operation is finally complete. Thank you,
:16:48. > :17:01.
:17:01. > :17:04.It's all done, all over, you've got The next few weeks see Abigail
:17:04. > :17:14.undergo the intensive physiotherapy that is vital for the procedure's
:17:14. > :17:19.
:17:19. > :17:29.Three weeks after the operation, and she's ready to show Dr Park her
:17:29. > :17:33.
:17:33. > :17:41.What did Dr Park say? Excellent is what I heard. For Abigail, a long
:17:41. > :17:51.road to recovery still lies ahead. What's our next goal? To succeed.
:17:51. > :17:56.
:17:56. > :18:03.Yeah, and we'll do it, won't we? Back in the UK, the situation has
:18:03. > :18:08.moved on. NICE has reviewed its guidelines on SDR. A Primary Care
:18:08. > :18:11.Trust is now willing to fund an operation. A few months have passed.
:18:11. > :18:14.We have been quite busy building up a team of very committed
:18:14. > :18:20.individuals who are very keen to develop the cerebral-palsy service
:18:20. > :18:23.here in Bristol. Kristian Aquilina and the paediatric team at Frenchay
:18:23. > :18:28.have been evaluating a number of patients to find the best candidate
:18:28. > :18:33.for the first operation. This will be on a six-year-old boy who has
:18:33. > :18:35.significant difficultly walking. This boy has everything else he
:18:35. > :18:39.needs. Hand function is perfect, he is cognitively extremely good, he
:18:39. > :18:42.goes to a normal school and is doing very well at that, he's got
:18:42. > :18:52.an extremely supportive family. We're very fortunate, I think, to
:18:52. > :18:54.
:18:54. > :18:59.find such a first patient, to be For Beau, the waiting is over.
:18:59. > :19:06.boy. So he's going to go too? OK. He is finally to have the SDR
:19:06. > :19:16.treatment that could help him, right here in the UK. I'm going to
:19:16. > :19:16.
:19:16. > :19:26.So, what do you think then? You going to be OK? Mummy's going to be
:19:26. > :19:30.
:19:30. > :19:34.with you and Daddy. It's going to It's the day of the operation.
:19:34. > :19:38.You're going to have some time with Kristian, aren't you? He's going to
:19:38. > :19:41.do some leg-fixing. It's a very, very exciting time. In a few hours'
:19:41. > :19:48.time, Beau will have become the first child to undergo Dr Park's
:19:48. > :19:52.procedure in the UK. I'm not sure how long it's going to take. About
:19:52. > :19:55.five hours? Probably about four to five hours, I think. Kristian is
:19:55. > :19:59.confident all will go well, but there are risks of complications
:19:59. > :20:01.and side-effects. As you know, the bladder may not function perfectly
:20:02. > :20:11.immediately after the surgery, but any disturbance will hopefully be
:20:11. > :20:21.transient, and after a few weeks it It's operation time, and tensions
:20:21. > :20:24.
:20:24. > :20:27.We really want to fast-forward time and have them come out the other
:20:27. > :20:34.end safely and as quickly as possible, so there's probably going
:20:34. > :20:42.to be a lot of clock-watching today until he's finished. We have every
:20:42. > :20:45.faith and trust in Kristian and his While Kristian may have trained in
:20:45. > :20:49.the SDR technique, only one other member of today's team has ever
:20:49. > :20:56.seen the surgery carried out. He's the neurophysiologist, who's on
:20:56. > :20:59.hand to monitor the nerve roots during the operation. Let's say
:20:59. > :21:04.this is L3 rootlet number one. Dr Park, Kristian electronically
:21:04. > :21:09.tests each rootlet. It's essential he cuts only those nerve roots that
:21:09. > :21:14.are causing the spasticity in Beau's legs. Severing the wrong one
:21:14. > :21:16.could cause bigger problems in the long-term. This is where it is
:21:16. > :21:19.important to undertake the selective part of the procedure,
:21:19. > :21:23.because by selective we mean that you choose the nerve roots that
:21:23. > :21:26.need to be divided. We only select the ones that contribute maximally
:21:26. > :21:31.to the spasticity in the legs, and we preserve the ones that are
:21:32. > :21:41.important for the function of the legs and the bladder. While the
:21:42. > :21:50.
:21:50. > :21:55.operation continues, all Beau's Sorry. He's in the best-possible
:21:55. > :21:58.hands, I know that. But those hands don't just hold the key to Beau's
:21:58. > :22:00.future. If the procedure goes well, it will prove its worth to the
:22:00. > :22:09.wider medical community and encourage more Primary Care Trusts
:22:09. > :22:12.to fund further operations. I think we should be able to do one or two
:22:12. > :22:15.a month at this point. That depends on whether we will be able to
:22:15. > :22:17.increase our level of resources at the moment. We have completed and
:22:18. > :22:21.received results from three different Primary Care Trusts and
:22:21. > :22:27.we're very delighted to see that all three of them have accepted to
:22:27. > :22:30.fund selective dorsal rhizotomy. It's fantastic, and the Government
:22:30. > :22:34.and the health authority and all the Primary Care Trusts, whoever's
:22:34. > :22:41.involved with this needs to sit up and look at what this doctor is
:22:41. > :22:47.doing. He is changing children's lives. Nearly five hours later, and
:22:47. > :22:50.the procedure is complete. It all went as expected, and obviously you
:22:50. > :22:56.can't evaluate the result at this early stage, it's just the
:22:56. > :22:59.technical part of it. We just have to see how he goes on over the next
:22:59. > :23:09.few days and, more importantly, over the next couple of months, and
:23:09. > :23:12.then take it from there. Beau is coming round. Mummy. You want your
:23:12. > :23:22.mummy? She is on her way right now. His operation marks a milestone in
:23:22. > :23:28.
:23:28. > :23:38.the treatment of children with Thank you. It is a pleasure. He
:23:38. > :23:41.
:23:41. > :23:44.wants to see you. Here's Bunny. Mummy and daddy are here now.
:23:44. > :23:47.will now stay in hospital to begin the physiotherapy that will be
:23:47. > :23:52.vital to his progress. It is this element to the overall SDR
:23:52. > :23:54.treatment that could cause the biggest headache to NHS accountants.
:23:54. > :23:58.These children do require a course of physiotherapy after surgery.
:23:58. > :24:00.It's not enough to do just the operation on its own. Of course, we
:24:00. > :24:08.have been concerned that the set-up of community physiotherapy in this
:24:08. > :24:11.country may not have the capacity to absorb some of these patients.
:24:11. > :24:16.You can't just do SDR without physiotherapy. The children
:24:16. > :24:19.desperately need the physiotherapy to get them mobile again. They need
:24:19. > :24:22.that rehabilitation. So I think the Government and the health authority
:24:22. > :24:29.need to look at this and re- evaluate how much physiotherapy
:24:29. > :24:35.they give to the children, because they need it. Abigail's family have
:24:35. > :24:40.had to pay for their own private physiotherapist. Throw. So far,
:24:40. > :24:43.Abigail's improvements after the operation show it's been worth it.
:24:43. > :24:47.She can only get better over the next few months, because we are
:24:47. > :24:52.only halfway through the first 12 months to see where we can get to.
:24:52. > :24:56.From the progress she's made so far, it's all good. She's hungry to get
:24:56. > :25:06.more. She wants to get her ultimate goal of walking across that room,
:25:06. > :25:07.
:25:07. > :25:14.It's a fortnight after his operation. Happy birthday. And Beau
:25:14. > :25:18.is celebrating, How old are you? Seven. But even today, there's no
:25:19. > :25:22.let-up in his intensive physiotherapy. 17, 18. It's already
:25:22. > :25:27.helped him to make a remarkable recovery. Well done, Beau, you're
:25:27. > :25:30.doing brilliantly. And it's given him a present he's always wanted.
:25:30. > :25:33.It's the first time ever that Beau's had shoes brought from a
:25:33. > :25:42.regular shop rather than something from disabled services, so quite
:25:42. > :25:45.First pair of shoes for your seventh birthday, Beau. Today, Beau
:25:45. > :25:55.will finally leave hospital, but first he has a very special
:25:55. > :25:55.
:25:56. > :26:05.Five months after her operation, Abigail can take a few tentative
:26:06. > :26:13.
:26:13. > :26:23.The past few months have seen Abigail and Beau undergo a life-
:26:23. > :26:30.
:26:30. > :26:33.changing experience, and it's only It's a journey they're going to go
:26:33. > :26:38.on together. Just the idea your child might be able to stand
:26:38. > :26:42.independently or walk independently, I can't believe it, really. It's
:26:42. > :26:45.going to be hard, but you'll do it, you will get through this. There
:26:45. > :26:51.are many more children who can benefit from this. We've got to
:26:51. > :26:54.move on from this being the first to this being the first of many.
:26:54. > :27:04.Abigail and Beau are taking their first steps so hundreds more
:27:04. > :27:22.