Henry George Ford is 7 years old and lives near Bath in the UK with his parents Simon and Polly and his little brother William.
Shortly after birth, Henry stopped breathing and needed to be resuscitated. He was later diagnosed with Peroventricular Leukomalacia (PVL) and as a result has Nystagmus and Spastic Diplegia Cerebral Palsy.
In April 2009, thanks to the help of an amazing fundraising effort by the local community, Henry traveled to St Louis, Missouri, USA for an operation called Selective Dorsal Rhizotomy (SDR) with the brilliant Dr T.S. Park, which has been life changing both for Henry and the family. Thanks to his courage and determination, Henry's story has been an example to other parents wishing to help their own children and by the end of 2010, around 50 families from the UK had followed Henry's journey to St Louis for this incredible procedure, with many more booked up for 2011. The bigger picture however, has always been to bring the procedure to the UK and have it available on the NHS so it is accessible to all and to this end things are beginning to happen and 2011 looks a big year for SDR in the UK.
More information about SDR can be found on this website by clicking the links to the left
UPDATE (24/05/11) FIRST UK
SDR PERFORMED ON THE NHS:
Ever since we began this SDR journey with Henry, people have always
asked why SDR wasn't available on the NHS and why we had to go to the
USA. At the time, it was the simple fact that apart from one patient
back in 2000, no-one from the UK had undergone this procedure and so
there was no evidence that it was effective. Our goal has always been to
bring this procedure back to the UK by publicizing it and trying to
change attitudes within the NHS itself. In terms of publicity, once we
had gotten word out and more families followed to St Louis for surgery,
the interest in the procedure snowballed. From our own exposure and that
of Tracy Llorca from Wells who took her son Lewis for SDR and went onto
GMTV to tell the story, both ourselves and Tracy began getting lots more
enquiries about the surgery and so Joan Puglisi, who heads up the PT
team in St Louis, set up a Facebook page called 'Selective Dorsal
Rhizotomy' to enable interested parties to come together and discuss SDR.
The page has been a huge success and is certainly worth checking out,
but the question still crops up - why isn't this available on the NHS?
When we had told Henry's consultants that we were going to take him for SDR, although they didn't know a great deal about Dr Park's procedure and couldn't advise us what to do, they were also supportive because they knew we had done our homework and were confident in our decision. Our Paediactric Neurologist was very interested, as SDR is after all neurosurgery. So we kept him informed and kept the information flowing to the team at Frenchay. This time last year we got an email from Richard Edwards at Frenchay telling us they were employing a neurosurgeon, Dr Kristian Aquilina, with the remit of bringing a full spasticity service, including Dr Park's SDR technique to Bristol.
From that point on we kept in touch with Kristian and his drive and enthusiasm to bring SDR to Frenchay was certainly encouraging. Henry's daddy went in to meet Kristian at Frenchay and gave a talk on SDR to the Academic Meeting of Neuroscience Professionals and discussed how to bring the surgery to the UK. It was agreed that a thumbs up from the National Institute for Health and Clinical Excellence (NICE) saying the procedure was safe and beneficial would be essential for progress. After much badgering, NICE agreed to review the procedure and with Kristian, Dr Park and Henry's daddy all consulting on the review, the new guidelines were eventually published in December 2010 and effectively gave the green light for the procedure in the UK. It should also be noted that Leeds also have an excellent Neurosurgeon called John Goodden who is also trained in Dr Park's SDR technique and will eventually bring it to Leeds we are sure.
In order for the procedure to be offered 'on the NHS,' the local Primary Care Trust (PCT) of each individual patient would need to agree to funding this operation. Having the thumbs up from NICE is certainly a big help in this, but the PCT needs to see that funding this procedure can reduce the costs involved with the current treatment of spastic CP, where the spasticity is simply 'managed' as it becomes a problem. Therefore, not only may this procedure be more cost effective in the long run, more importantly it can significantly change the lives of children and families within the UK for the better.
So, going back to the good news. Two weeks ago, Kristian Aquilina performed the first SDR using Dr Park's technique in the UK, at Frenchay Hospital in Bristol (see link below). The accompanying huge news is that the local PCT agreed to fund the operation, so in effect the patient had this surgery on the NHS!!!!! It's obviously early days, but Kristian and the team at Frenchay are very excited and the prospects look good for the future. We have been contacted by many families who are daunted by the thought of raising the money to go to Dr Park and aren't as lucky to have a wonderful support network of family & friends like we have and therefore do not consider SDR a feasible option. Well this latest news offers them hope. It may still take some time for other PCTs to come on board with regards funding, but we believe that this is the start of what we have been working towards for the last two years. Congratulations Kristian, as they would say in St Louis - Good Job!!!!!
UPDATE (29/01/11) HAPPY HAPPY HAPPY NEW YEAR: We have had such a manic start to the year with our house being flooded by a burst water pipe, we really didn't see this coming and it has totally blown us away!!!! Last Friday we got a call from Henry's school to say that he had just walked 5 steps independently. He was doing his physio and stood up against a wall and he just went for it without warning. We were amazed because although he was doing really well with 1 point canes, he had given us no indication he was going to do it. I guess the moment was right for him. Anyway after an excited Mummy picked him up from school and she had seen him do it, she took him on a mini tour to show Daddy and the Grandparents at their work although, the novelty was wearing off slightly and he was doing 2 or 3 steps at a time, but it was still wonderful to see. Considering we were told a few years back he would never walk unaided this really is a huge landmark. THANK YOU DR PARK. Anyway. the next day we had a photoshoot booked so we got him to do it again and even got the picture above We know this is just the start and he's a long way from toddling around on his own for any significant distance, but it fills us with such hope that we know he can do it. THANK YOU EVERYONE INVOLVED FOR HELPING US GET THIS FAR. XXXX
If you can't watch through YouTube, Henry's before & after SDR videos can be found using the following links:
Henry's Videos can be found as below:
HENRY'S 6th MONTH POST OP VIDEO: http://www.youtube.com/watch?v=za4-ZOoIfXM
HENRY'S FUNDRAISING VIDEO: http://uk.youtube.com/watch?v=UwidRfvTuEc&feature=channel_page
HENRY'S LATEST VIDEO (28/07/09): http://www.youtube.com/watch?v=hCwPOLj7TpQ
HENRY'S RADIO SOMERSET INTERVIEWS: (left click to play, right click 'Save As' to download)