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UPDATE (14/12/10): MERRY CHRISTMAS: Well it's coming to the end of another eventful year. We had another trip back to see the wonderful team in St Louis and can also report that Henry's vision shows significant signs of improvement since his eye muscle surgery with Dr Tychsen. Henry has just come back from another 3 week session at Footsteps where he worked really hard and is still going to the Megan Baker House once a week for conductive education. Now the holidays are upon us and both the boys are really looking forward to Christmas. Yesterday they were both in the school nativity play, where Henry was the announcer who introduced the play and William was a dog. After the play Henry and his Mummy and Daddy had an interview with the BBC regarding both Henry's progress and the forthcoming report from the National Institute for health and Clinical Excellence (NICE) on SDR. If this review is positive it would mean that the NHS could begin doing Dr Park's surgery in the UK once all the funding issues are resolved. Henry's Daddy was a consultee on the document so knows what is in it and says that although it isn't perfect, it won't be a barrier to SDR being performed in this country, which is great news and a huge step forward. It is just left for us to wish you all a very Merry Christmas and Happy New Year!!!!

UPDATE (21/09/10): BACK TO SCHOOL (NOT JUST HENRY): Where does the time go. It doesn't seem that long ago that we were in St Louis, but since then our friends from St Louis have been back over to the UK, Henry has spent 3 weeks at the Megan Baker House over the Summer holidays and now it is back to school. This year though, Henry is not the only one going to school, as his little brother William also started at St Benedicts. In fact he will be going more than Henry because Henry got on so well with his conductive education at Megan Baker house in the Summer, they offered him a weekly place. So after speaking with St Benedicts (who were brilliant about it as always), Henry will go to school for four days a week and Megan Baker once a week. We really think that this will benefit Henry enormously (otherwise Mummy wouldn't have a 2.5 hour drive (each way), once a week!). At Megan Baker, Henry has already started to use 1 point canes with occasional support on one wrist. This alone is something that wouldn't have even been considered prior to his SDR surgery. We'll put more video up when we have chance, including him walking with his 1 point sticks. Onwards and upwards!!

 

 

 

UPDATE (17/05/10): MEET US IN ST LOUIS, LOUIS: Well we're all back in St Louis and having a great time so far. You can follow us in more detail by going to the page: St Louis Diaries 2010

 

UPDATE (17/05/10): MORE FOOTAGE & BACK TO ST LOUIS: We still can't believe it's been a year, where has the time gone, but Henry is flying back out to St Louis next week for his 12 month check-up with Dr Park. There is also the small matter of his Kestenbaum gaze transposition procedure with Dr Tychsen which should improve his visual acuity by up to a third. Although Henry does still need the surgery, we are really looking forward to the trip and can't wait to spend time with our friends, John, Shannon, Jack and Nicola. As requested, we will keep the website updated with a new St Louis Diaries 2010 page so you can follow Henry's progress. Finally, we have put together some more footage of Henry which has been taken over the last few months. Unfortunately, there isn't enough footage of him walking with his sticks as he is doing really well with them, but most of the time we had the camera he wanted the safety of his kaye walker. Anyway, footage can be found here: http://www.youtube.com/watch?v=AfOwrxNJpF0 and we'll try to put more up when we get back from St Louis.

 

UPDATE (28/04/10): FANTASTIC NEWS FROM BRISTOL: Anyone who has been following Henry's site may know that we have been following the work of Dr Park and his team for around 4 years and after conceding that his version of SDR would not be available in the UK in time to give Henry his best opportunity, we decided to go to St Louis last year. Throughout this time, our paediatric neurosurgeon supported us and was very interested in the procedure. He is part of a fantastic team of neurosurgeons based at Frenchay hospital in Bristol (We think they are the best in the country). I have been doing my best to keep abreast of developments at Frenchay because I know they would like to add SDR as a treatment option and yesterday got a very encouraging email from Mr Richard Edwards, Consultant Paediatric Neurosurgeon. I've copied the email in full as it is self-explanatory, but it is great news and one step closer to bringing Dr Park's SDR to the UK. Let's hope they can now get the funding in place:

Dear Mr Ford

We have just appointed a fourth Paediatric Neurosurgeon, Mr Kristian Aquilina, to Bristol. He has been appointed with the specific remit of developing a full spasticity service. He has completed a prestigious fellowship in Paediatric Neurosurgery at St Judes Hospital in Memphis USA ( in addition to his UK training) and as part of this was trained in the SDR technique. He is also trained in the impantation and maintainence of Baclofen pumps so will be in the best position to determine the optimal treatment for any given child. He has also visited TS Park who has kindly offered to visit Bristol to assist with the initial cases once we have the service in place.

SDR is a specialised procedure, and our view is that it should be undertaken in a small (at most 3 or 4) number of highly specialised paediatric neurosurgical centres in order to concentrate expertise. It is essential that any such service is supported with an appropriate infrastructure (e.g.
gait labs, trained physiotherapists /rehab specialists, neurophysiologists, paediatric neurologists with an interest in spasticity management etc). Most of these are already available at Frenchay and we would hope to formalise the patient care pathway and be in a position to offer the procedure
within the next twelve months (particularly as we now have a surgeon trained in the technique and would not wish to see this training eroded through an overly long "set-up" period).

Funding such a service is likely to be the major issue. I am aware that NICE are evaluating SDR and if they give it the "thumbs-up" this will add significant weight to plans for service development.

It is very important to have patient /parent support for this sort of service .The current situation, with some parents self funding to have the procedure undertaken abroad at their own expense, without the option of expert follow-up etc is unacceptable.

I hope this information is of help.

Yours sincerely

Richard Edwards

 

 

UPDATE (23/02/10):  NEW FAQs PAGE ADDED: Henry has his Selective Dorsal Rhizotomy with Dr Park on 31st March 2009. He has come on in leaps and bounds and we are so proud of him. When we decided to take Henry to St Louis, Dr Park's SDR was unknown in this country and we have always tried to raise awareness in the UK of this amazing procedure. As the interest grows we are receiving plenty of questions to this site and lots of them have common themes. Therefore, we have decided to add a Frequently Asked Questions page which will hopefully help people from the UK who are searching for more information about what SDR is and how we went about the huge task of getting Henry to St Louis. Hope this helps and if your questions still aren't answers feel free to mail us using the address below.

 

UPDATE (08/01/10):  HAPPY NEW YEAR!!!!!! Hope everyone is well haven't broken any New Year resolutions yet ;o) We certainly have one resolution for this year which we will be trying our best to achieve!! Anyway, we're looking forward to the year ahead and have confirmed Henry's follow-up appointment with Dr Park and eye surgery with Dr Tyschen for the first two weeks in June.

Talking of Dr Park, BBC South has been following the story of Charlotte Wakefield as she travelled to St Louis for SDR in December. They have shown clips throughout the week on the BBC South Today programme and they are now available to view online, here: http://www.bbc.co.uk/southtoday/features/charlottes_journey.shtml. It's a good programme and Henry loved watching it and seeing Dr Park and Michael.. It did make his mummy a bit emotional though ;o)

 

We are still really happy with the way Henry's therapy at Footsteps went in December. The spider therapy was great and we wish we could get booked in sooner than next November for the next lot! Have a look at the site for more information http://www.footsteps.ltd.uk/index.html .

 

UPDATE (01/10/09): New FACEBOOK group for Selective Dorsal Rhizotomy: Joan Pugsli (coordinator for the Cp centre in St Louis) has set up a new Facebook group called 'Selective Dorsal Rhizotomy.' It is a great reference point for anyone interested in SDR. Please see below from Joan:

Dr. Park and staff would like to invite you to join our Selective Dorsal Rhizotomy Group on Facebook.  We are dedicated to providing support and accurate information for patients and families of patients with cerebral palsy.  This group has been created to enable patients and families who have undergone SDR or may be considering SDR to exchange ideas and discuss their experiences.

You can find the group by logging onto Facebook.com and then clicking on the “Groups” icon at the bottom of the page.  Once there, type “Selective Dorsal Rhizotomy” in the search window.  You can then join the “Selective Dorsal Rhizotomy - St. Louis Children’s Hospital” group.

We hope you will consider taking part in our Facebook group.  Thank you for your support.

UPDATE (14/09/09): Henry's doing great and well done Lewis: It's now been 5 months since Henry's SDR and he still continues to get stronger and stronger. We are still so excited at the things he can do now which weren't even an option in March, especially riding his new Pashley Robin Trike (we'll get some video footage up soon). Yesterday we went to Glastonbury Tor for Auntie Sam's birthday and Henry was determined to get up there himself. Apart from parts where the path is narrow and really steep, he managed to either walk with Uncle Bob and Granny holding his hands, or crawl up some of the trickier bits. It really is a BIG hill and before surgery Henry wouldn't have been able to lift his legs enough to get up some of the bigger steps, but he did great!

                                It was really great to see little Lewis Evans on GMTV this morning. He is now a couple of months post SDR and looks like he's doing great as well. It certainly looks like they are as happy as we are with the results and he looks on course to walk his Mummy down the aisle when she gets married. We were very impressed by his interview on LIVE TV!! At least our TV appearances have been edited so far!! ;-D Anyway, keep up the hard work Lewis and we may get Henry down to compare notes soon as you just live down the road in Wells. Lewis' story is also covered in today's Sun Newspaper and can be viewed at http://www.thesun.co.uk/sol/homepage/woman/real_life/2635332/Miracle-spine-op-for-cerebral-palsy-boy.html

 

UPDATE!!!!! (08/06/09): ST LOUIS CHALLENGE: AWESOME!! - Well what can I say?? Friday night, 10 teams turned up at Midsomer Norton Rugby Club faced with the HUGE task of covering the 4122 miles between Midsomer Norton and St Louis on exercise bikes in just 24 hours. What followed was an unbelievable effort by everybody involved and the 24 hour deadline was totally SMASHED with the miles being completed in 15 hours and the distance covered by 9am on Saturday morning. To underline the enthusiasm of all involved, once we had hit St Louis, people still wanted to get on and ride further, especially those who were turning up to cover the Saturday shifts.

                So with the collective miles achieved and the task put to bed a few special mentions should be given to the Team Winners - Timsbury FC, who covered 412 miles quickest at an average speed of 26.3 mph. Marcus Seymour covered the furthest distance for the men and Sofe Green for the ladies. In the category for fastest riders, the fastest average speeds were recorded over at least 60 minutes. Awards went to Mark Bale (29.15mph for 160 mins) and Charlene Vranch (29.21mph for 125 mins). I would also like to give a mention to the two teams that kept two bikes each going through the night with only 5 riders, which was a very tough task - Marcus Seymour 6 and Welton White Hart.

                To view the statistics from the St Louis Challenge please find file here: St Louis Challenge

                It just remains for me to thank everyone who made this possible, including Midsomer Norton Rugby Club, Sarah Kittelty for arranging the superb after-party, L&F Jones for providing refreshments, Graham Bullman for the excellent stats sheet which kept everyone motivated and Neil for coming up with idea in the first place. Finally, it wouldn't have been such a spectacular success without all the work from the team captains and the dedicated riders - I hope the saddle sores are getting easier ;o)

                See you all next year???????? We have something a bit different in mind already, watch this space.......

 

 

 

UPDATE!!!!! (28/04/09): WE'RE BACK HOME SAFE AND SOUND: Hi Everyone. Just a quick note to let you know that we've arrived back after our epic journey from St Louis-Memphis-Amsterdam-Bristol-Midsomer Norton! It's our first full day here and we're still shaking off the jet lag. We've still been busy trying to reply to all the mail and phone messages left for us and we did an interview for the local paper. They have let us know how many people have been following Henry's progress back here, so thank you to everyone for your support. Again, thanks to everyone in the USA for helping us get through a tricky month and now we've had time to reflect and watch Henry move around without being in pain, we know it has been worth it. We have a lot of therapy and hard work still ahead of us but we know the hardest part is over. We'll keep updating the website with Henry's progress and keep an eye on the local TV and radio. The Ford Family x x. 

 

UPDATE!!!!! (24/03/09): FLYING THIS WEEK: We fly out to the USA on Friday (27th) and would like to thank everyone for their good wishes. Still a few things to do this week, we had BBC Points West around today for an interview and have also been interviewed by HTV West (shown last Saturday) and the Somerset Guardian. In order to try to keep everyone updated with events in St Louis I have created another link called The St Louis Diaries and we will try to keep it up to date. So that's about it, apart from once again saying a big thank you to everyone that has made this happen and hopefully it will have the massive impact on Henry's life that we all dream of. Thank you x x x.

 

UPDATE!!!!! (16/03/09):  2 Weeks To Go!!! We are flying out to the USA on Friday 27th 2009. The SDR procedure is booked for 31st March. The fundraising continues and we are still receiving generous donations which we are still amazed by and can't thank everyone enough. Well done to all who completed the Bath Half Marathon yesterday and don't forget the SNEAKERS event on Friday, with a prize raffle and the selection of the draw ticket winners.

 

EVENT UPDATE - 6th February 2009:     PARFANON and The Boogie Knights. Despite the difficult weather conditions, this event went ahead last Friday (6th Feb). We would like to thank everyone who made this possible: Les, Gary, Bob, Tim, Nudger and everyone at Paulton Rovers, the army of spade-wielding snow shifters who arrived at short notice to clear the car park, Parfanon for their determination to play and excellent performance on the night, Nick and Mike for the disco, Jammer, Rich, Bob and Clive for handling the door, Nannan for the draw ticket sales and EVERYONE who braved the snow and made the night a success!

 

12th JANUARY 2009:    

HENRY IN THE PRESS:

TV: Henry appeared on 'The West Tonight' Sunday 11th Jan. The interview can be found at http://www.itvlocal.com/west/news/?player=WST_News_15&void=277330

Radio: A radio interview for BBC Somerset is due to be aired as part of the 'Breakfast Show' on Tuesday 13th Jan. The interview will also be available on the BBC Somerset website, details to follow.

Papers: Henry has also appeared in the Somerset Guardian who ran a story on 8th Jan. http://www.thisissomersetguardian.co.uk/

 

8th JANUARY 2009:     DATES CONFIRMED - We have now had confirmation of the dates of Henry's operation from St Louis. Henry will report to the hospital on Monday 30th March with the operation on the 31st March. He will be in hospital for a week and remain in the USA for intensive therapy for 3 more weeks, returning around April 25th. We will continue in our attempt to raise the $44,300-$51,800 required for the operation beforehand but we are prepared to raise the remaining money throughout the rest of the year as will probably be the case. A big thank you to everyone who has shown your support and planned fundraising events for the coming year.

EVENT UPDATE!:     PARFANON and The Boogie Knights. Tickets will soon be on sale for this fundraising event at Paulton Rovers FC, Friday 6th February, 7.30pm. Cost will be 5 pounds and available from friends and family. More details to follow.

HENRY IN THE PRESS:    We have been contacted by the Somerset Guardian who are running a story in todays paper (out 8th Jan) and we are also being interviewed by BBC Somerset sound for a story to be aired on the Breakfast show on Monday 12th January.

 

2nd JANUARY 2009:  HAPPY NEW YEAR!!!!  Hope everyone had a good Christmas. We have been overwhelmed by the generous donations we have received over the Christmas period and really can't thank you all enough. Now the new year is upon us we can push on to raise the $44,300-$51,800 needed to send Henry to the USA for SDR. We will also have to talk through the logistics with our family and friends to work out when would be the best time to go. As it stands, the earlier Henry has the procedure the better so it may be a case of us booking for April/May and if we can't raise the money by then, we will have to borrow it and pay it back with more fundraising when we return. Anyway, further updates should appear here.

 

 

9th DECEMBER 2008:                                                                                   MAJOR UPDATE!!!!!!!!!!!!!!!!!!!

We have just received news from Dr Park's team in St Louis that they feel Henry is an excellent candidate for selective dorsal rhizotomy, details as follows:

Dear Mr. and Mrs. Ford,

Thank you for sending this Henry’s videotape and medical information for evaluation for selective dorsal rhizotomy surgery.  We have reviewed the video and information and feel that he shows the same typical signs of spastic diplegia as many other children who have benefited greatly from the selective dorsal rhizotomy.  We have seen consistent improvement in children very similar to him.

               

We feel that Henry is a very good candidate and we strongly recommend the rhizotomy surgery for him.  If he has the surgery we expect that his sitting, standing, walking, transitions between postures and level of comfort will all improve significantly?  He has a chance to walk independently without the need for an assistive device if he can dorsiflex his ankles.  Since we didn’t see that on the videos, we are unable to predict independent walking as a certainty at this time.  If he does achieve independent walking, his walking will not look normal.       

 

For all of the reasons mentioned above, we feel that Henry is a very good candidate for the rhizotomy surgery and that the permanent reduction in abnormal muscle tone will help him significantly.  Once again, we strongly recommend the surgery for him.  Please let us know if you have further questions. 

OK so we are obviously pleased that they feel that they can help Henry and I guess this is where the fund raising begins in earnest. Anyone got a spare 30 grand knocking around ;o)

 

 

12th NOVEMBER 2008:

We are currently in contact with the Children's Hospital in St Louis, USA and assessing Henry's suitability for Selective Dorsal Rhizotomy (SDR). If he is considered a candidate, we will begin fundraising once more to attempt to raise the £30,000+ required to fund this potentially life changing procedure.

Our contact with Dr Park's team at the St Louis Children's Hospital began 2 years ago while we were researching possible treatment options for Henry's spastic diplegia. At the time he was considered a good candidate for SDR and because he was within the recommended age range 2-7 years for the procedure at St Louis we were keen to pursue SDR as an option.

However, as we knew of one centre in the UK that performed SDR (ORLAU in Oswestery), we decided to get Henry assessed for this procedure as the logistics would prove easier in the long run. For a variety of reasons as shown in the update below, the SDR procedure at ORLAU was not suitable for Henry and so 2 years on and we are back in contact with Dr Park's team in St Louis.

At present we have submitted the assessment from ORLAU and detailed reports on Henry's progress to St Louis and they still feel Henry may benefit from the operation. We now have to supply X-Rays and a video evaluation to complete the initial evaluation (which we are close to completing). A new MRI scan will also help, although not compulsory and so we will send this information on after submitting the initial information.

So, that's where we stand at present. There is a lot to consider and it is a huge decision for the whole family. We will be taking the advice and voicing any concerns from Henry's current therapy team as well as weighing up the risks for Henry both now and in the future. Then of course, there is the small matter of finding the £30,000 plus travel costs to cover the procedure. But at the end of the day, if we feel that this procedure is the way forward to give our little boy the chance of improved mobility and who knows, independent walking, then we will do everything we can to make it happen.

 

 

22nd OCTOBER 2008:

We have just received the assessment report from the ORLAU team at the Robert Jones & Agnes Hunt Hospital in Oswestry and they do not feel that Henry is a suitable candidate for their SDR procedure. We weren't really surprised by the outcome because the clinical trials did freak Henry out a bit and he did not entirely co-operate with everything they wanted him to do. We did also get the feeling, especially from Dr Roberts that they never thought it would be an option for Henry and they were just really 'going through the motions' by doing the evaluation. We also had issues with a few other comments in the assessment, for instance they cite Henry's inability to tolerate ortotics, whereas the reality has been that he has been given poorly fitting splints and AFO's and we were advised he didn't wear them (we have only just been given properly fitting splints and he wears them throughout the night!).

As the operation is still at a clinical trial stages in the UK, the patient selection criteria is quite restricted. Therefore, children older than Henry are chosen who are already ambulating to some degree. They then undergo the ORLAU procedure (which is more invasive than the USA version) and usually show subsequent GAIT improvements. In Henry's case it would have meant that he had major surgery to achieve a slight improvement in walking pattern - but would always need a walker and multi-level orthopaedic surgery, probably in his teens.

So, are we upset by the evaluation report?? Maybe not so much as we thought we might. Now we understand the only available UK version of SDR, we are not sure it is the right thing for Henry, especially considering the type of surgery. We will still look into the possibility of Henry getting SDR with Dr Park's team in the USA (which is more of a keyhole procedure they have performed on 1000 or more patients). Look out for further updates.