LATEST NEWS
Edward 8 days post admission
This website has been set up with two aims- one is to raise the funds required to enable Edward to lead as full and active life as is technologically possible, the other is to continue to raise awareness of the devastating disease Meningicoccal Septacaemia (click here).
Whilst Edward will have his prosthetics from the NHS at no cost, these do not compare to the prosthetic limbs available privately.
We will be updating this page with the costs of limbs currently available and the advantages to Edward.
We will be attending a consultation at Dorset Orthopaedic Centre on Tuesday 7th August.
We received funding for the initial consultation at Dorset Orthopaedic Centre from a charity organisation called Peggy & Friends, they have been most helpful.
We were greeted at the Clinic by lovely people, Edward was seen quickly and the Prosthetist did a full and thorough examination. We were shown the arm that they would provide Edward with, it was an extremely lightweight myoelectric arm(Myoelectric - the technology of taking human nerve impulses or electrical impulses from outside the body and converting them to an electric current). When the fitting is complete, it would be hand painted to look like his brothers. Again, the legs were far superior to those that we are aware of being available on the NHS, but we will keep you posted on this. We now have to decide how to fund the massive amounts needed, although enough has been raised for the initial prostheses, Edward has a lifetime of needing them updating, both size wise (and he will grow lots!) and keeping at the forefront of technological advancements. If Edward was to fund them himself, he would run out of money before reaching the age of 10!
We believe that these prosthetics should be available for children on the NHS, they argue that they supply limbs, but the quality, comfort, function and cosmetics do not compare. We will update this page with pictures of what he has been supplied with at a later date.
September 07 - The initial cost of good set of quality limbs from Dorset is £30,000! We have received the 'rockers' from Nottingham today. They are of a hard material which go right into his groins, this is very uncomfortable for Edward, if not impossible for him to get the correct gait to enable him to walk. The fit, we feel is not too good and we believe he could receive better from a clinic which is not concerned with cost, but with the benefits to Edward.
We have now contacted various local PCT members and the local MP to ask that the PCT either supply and fit the prescription from Dorset at Nottingham or fund the prescription at Dorset. We will update you on how this goes.
12th September 2007 - We have had a meeting with the Consultant and Service Manager at the Mobility Centre at Nottingham City Hospital, where it was agreed that another meeting be arranged for 3 weeks time to discuss the prosthetics the they will supply Edward with. Once we have this information we can then research and compare the prescription from Nottingham with the one from Dorset and decide which we think Edward would benefit most from.
When deciding which prosthetics are suitable for each individual COMFORT is the priority, (in Edward's case this would include the damaged skin that the prosthetic will fit on to), next is the FUNCTIONALITY, followed by the COSMESIS.
November 2007 - After meeting with the Consultant and Service Manager at Nottingham Mobility Centre a new plan for Edward has been put forward to us, and this is currently being actioned. This is great news for all of us, basically, the limbs and components Edward will receive for the next year will be the same as those offered privately, so a big thumbs up to everyone involved.
Our long term goal for Edward remains the same, to ensure that he is able to achieve his full potential, which we believe will give Edward independence and choices in his adult years. Over the coming years we have to work with Edward to ensure that he can complete basic tasks and tasks which will enable him to live on his own if he chooses, this will be done over the next 10 years or so and will require patience, determination and consistency.
We are going back to the Mobility Centre mid December to discuss Edward having legs made with knees and feet. Edward is doing brilliant on the 'running' legs, he has mastered the height and balance and he has tonnes of confidence on them. We keep trying to be one step ahead of Edward but it is proving quite difficult. He just gets on with things, not much is a problem, just a challenge and Edward has always enjoyed a challenge! The 'running' legs are a wonderful tool for Edward has he has so much energy and over the years they will enable Edward to use some of this energy on sport.
Feb '08 - Our goals and aims remain the same, to ensure that Edward is able to lead a full and independent life in his adult years. We went back to the Mobility centre in December and asked for them, funding is currently being applied for, nearly 3 months later and we are still waiting, but apparently the funding will be for a year! Edward has just been fitted with some 'slippers', we wanted something that Edward would be able to put on and take off by himself, something really easy. He came home with them on the 1st Feb and since then we have not seen him crawl or roll anywhere, he puts them on, goes into the kitchen, loo or wherever and takes them off whilst he is sitting still, not that he sits still for long. So, we are really pleased that we have got something that helps him regain his independence. We go out on Sunday mornings up the road on the running legs and we are trying to get a little further each time. He has just had another right arm, much shorter and better than the last one, but again it still has a very limited use. We believe that he is going to be tried with a myo soon....watch this space.
Edward is able to dress himself, although he does need help with shorts when he has got his legs on. He can wash, get to the loo independently, clean his teeth, get in and out the bath, although as he progresses we can see the need for things like automatic shampoo/soap dispensers, just to make life a little more streamlined.
February 5th 2008 - We telephoned Nottingham to request a meeting and today we have had a call to let us know that the meeting is scheduled for Wednesday 13th Feb. We briefly discussed with the Consultant on the telephone - legs with feet and knees, myo-electric arm, better fitting lower limbs and limbs which will enable Edward to take them off and on himself. At the moment Edward's right leg pylon is very 'sloppy' and he needs a belt to hold it on, he does not tolerate the belt very well.
Edward has just made some new goals, these are as follows:-
1. To be able to walk to school by the age of 9
2. To be nearly always using his legs to get about for short distances by the end of March
3. For mum and dad to be only doing the same for Edward as we do William by the end of April where ever possible
April 15th 2008
number 1. He is almost doing this now
Number 2. Edward has most definately suceeded at number 2, he is always on them in the house or out playing with his friends.
Number 3. Not far off, although, when we have the myoelectric arm it should help with opening doors etc.
Edward is currently undergoing training with the myo arm and it is going really well, he had a full assessment today and they have found 2 points on each arm, meaning in the future he should, if he wishes be able to have 2 full functioning (that is opening and closing) hands. We will let you know how this goes.
He still struggles with the belt and we have asked for some other form of suspension for the prosthetic, again we will keep you posted on this.
At the moment, things are going really well for Edward (and for us), and we feel everything is going forward to the life we wish for him, that is a very happy life.
May 21st - as you will be aware Edward now has the 'bendy' legs, that is, the ones with knees and feet. The others are called 'slippers' and 'running' or 'tigger legs', yes each set has a purpose and each set has a name! He did amazingly well (once again) with the 'bendy' legs, but once he acheived his goal, in 2 days, which was to walk unaided across the living room, he has decided he won't wear them too much because..........he still dislikes the belt. We have been asking for a new type of suspension for months and finally we have been told Edward has a choice of 3, he will be fitted with these early next month. The arm is on hold, they are waiting to see if Otto Bock come out with any new paediatric appliances. So, he continues to use the limbs he has, albeit excellently well. He plays the PS3, XBox and Wii at the same level as his brother William. We continue to strive for choices for Edward and as mentioned remain comitted to ensuring he gets choices.
As for his goals, he walks 95% of the time and he could now make it to school, if we had the time! He can do most things, but being the typical boy that he is, he will generally try to get away with most things ie. cleaning his teeth, washing etc.
Edward loves swimming and both William and Edward are very privilileged to be taking private swimming lessons (given free, by a lovely swimming teacher) courtesy of a very generous local businessman (and his lovely wife). We are currently looking into providind Edward with an endless pool, which will provide one of the best forms of physiotherapy(which he will need for life to remain in tip top condition), give him a focus if he chooses to take swimming seriously, ie. competitive sports and of course lots of fun.
On May the 30th Edward is being admitted to Birmingham Children's Hospital for plastic surgery on his lips, nose and some keloid/hypertrophic scars that he has on his face. We will let you know how he goes on.
Edward has had surgery to cut the keloid scarring on his lips and nose, a skin graft (called a wolfe graft or full thickness skin graft) to the area and a tight scar on his leg cut and grafted on the 30th May 2008. He requested a needle to deliver the anaesthetic to get him to sleep as he really struggles with the gas. The Anaethetist was fantastic and managed to get one in first attempt in his arm! Edward did not feel anything and was soon fast asleep. The actual surgery took around 3hrs, but it was 4hrs before we were called to the Recovery room. It feels like a lifetime, and although we have been there so many times it does not get easier, we still worry with regards everything being fine. The only pressure we do not have now is getting that phonecall telling us that they have to remove more of something than first thought, which we have encountered on numerous occasions in the early days. Edward was in a little pain when we arrived in Recovery, but it was nothing compared to how he usually comes round, usually he is struggling, crying and very 'out of it'. He was up on the ward in no time, and was soon tucking into fish and chips and drinking well. The lovely Mr Richard and Anaethetist was happy for us to go home the same night, which was an added bonus. We now await Wednesday when the dressing on his nose, (which is stiched firmly in place) will be removed and we will see the results. This is not the final surgery to his face he will require lots more as he grows. The bottom of the right nostil has been eroded and will require reconstruction later on, but at least he will be able to breathe through 2 nostrils now. We willl post the latest update with pictures after he has attended BCH on Wednesday.
3rd June 2008 - We have kept Edward off school in order to decrease the chance of his lip being banged, unfortunately he has banged it at home. He has pulled one of the stitches holding the dressing in place and we are hoping when we return tomorrow it won't have caused any lasting damage to the graft.
4th June 2008 and we have been back to Birmingham to have the dressings removed. The knock he took to his nose yesterday was just where he had caught one of the stitches, phew!!! Edward was really brave when they snipped the stitches on his nose and mouth and he practically blew the gauze out of his right nostril. We are all really pleased with the outcome, Edward can now breathe out of both nostrils again. He then had to endure some very thick staples being taken out of the area grafted on his inner thigh, it was very tough, for him and us and he screamed and cried for daddy to make them stop! But job done and success as the graft has taken to the cut area. In the above right picture there are still some stitches in some bruising and all it has to do now is settle.
This picture is taken 2 months' post-op and the skin is healed. Edward will require further surgery to his face in the future, but for now he can breathe through both nostils. We need to cream the scarred area daily.
Edward is still waiting for his lower limb prosthetics to be recast so that they are comfortable and fit correctly. Due to the surgery, which he had on his left leg, it has changed the shape of the left leg considerably.
The diagram below shows roughly how they have changed shape - the right one shows the leg post operatively
Edward is constantly improving with his activities of daily living as time goes by with practice becomes adept at these tasks.
Unfortunately we have still not had the myo electric arm. And when Edward does get it he will receive only one limb.
Since the operation on the 31st May Edward has taken a bit of a step back with regards mobility and walking. It took him about 3 weeks before he was able to fit the left leg on without pain, then as mentioned his legs had changed shape, so we 'made do' until new 'slippers' were made. Unfortunately, these were not suitable and since then Edward developed an abscess on his right leg, so swimming was off and antibiotics on. Today (29th July) the antibiotics have done their job, we have cleaned and dressed the wound daily and he is just starting to get mobile again. He is currently running around the house along with an awful lot of friends.
Of course the BIG news is that Edward's Support teacher at St. John's is going to take part in the quiz show, ARE YOU SMARTER THAN A 10 YEAR OLD. She is just great, she does a wonderful job with both William and Edward at school, in fact they both got straight A's for effort. Mrs Bateman has pledged 1/2 of her winnings to Edward's Appeal, now is that dedication or what? So we are all off to London at the beginning of August to be in the studio audience. I think it is on Sky One in October so keep your eyes peeled.
We are returning to Kent in August.
(That is the beautiful cottage in the background.) Thanks to Rachael and her mum and dad. We have been invited back down there and the boys want to fish, fish, fish! Whilst down there we will go and visit Ellie-Mae again and we also have an appointment booked at Dorset Orthopaedic Centre to see what they have to offer and if they can help us to help Edward.
We are looking at getting the boys extra tuition for Maths and English in September. This will ensure they do not get behind when they have to take time off for appointments, but also to help give them a head start in their futures. Although Edward is determined he is going to be: a Policeman, Soldier or Fire Fighter we do keep telling him that we do not think this will be possible and maybe he ought to think of something else!
If you know of anyone who offers extra tuition (maths and english) please email us or phone us with your recommendations
We had our holiday in Kent, and it was truly relaxing, yes, even with the boys! They did LOADS of fishing, visited the zoo and visited Ellie-May. William managaed to get a fish hook through his wrist and visited Maidstone A and E. Rachael, Richard and Joanna's daughter, was visiting as well so we were able to catch up. We could not visit Dorset as Edward had a little bit of an upset stomach. Elvis the pony is still at the cottage, and he still nips. At the cottage is a lovely long corridor and it was here that we practised walking independently on the 'walking legs' twice daily, by the end of the week Edward made his first independent journey down the 30 foot corridor, scary, for us anyway, but he did it brilliantly and made superb progress, using his long legs to walk when we were out. Thank you to Richard and Joanna for inviting us back to the cottage with such beautiful and peaceful surroundings.
We will be visiting 
, this is in Cheadle, Manchester, in September for a meeing to see if they are a suitable alternative to Nottingham Mobility Centre and Dorset and will let you know how we get on.
We did visit PACE and had a lovely visit and were very encouraged by what they had to offer in terms of limbs and physio. They spoke about the need for urgent and intensive physio with Edwards big legs.
September 2008 - Nottingham are reluctant to give Edward the suspension socket for the running legs for various reasons.
Eward will be visiting BCH again on the 1st September, for review.
Please see diary for Holiday to Florida courtesy of The Sun
We were advised by Derbyshire County PCT to 'try out' another NHS Limb Centre and so we opted for Selly Oaks in Birmingham. He should have his first appointment here around the end of March 2009 and fingers crossed we will be happy with service provided.
December 2008 - Edward was due to go into Birmingham Children's Hospital for 3 balloons inserted into his legs (tissue expanders) and have saline injected over a few weeks, unfortunatley he caught a bug and the operation was cancelled and rescheduled for February 2009, this date clashed with the school activity trip due to take place in May and we felt it would be cutting it too fine after the surgery to put the new skin over the old grafted areas and it now looks like being the beginning of June when the surgery will take place.
Part of the reason for not updating the website has been the extensive works carried out to the ground floor of our house to accomodate Edward as he gets older. Derbyshire County Council have built a wonderful ground floor extension/bathroom to aid and encourage independent living for Edward as he gets older. The workmen have been a delight to have around, so a BIG thank you to them all. It is now complete and we are nearly back to normal........
Further to our visit to PACE Edward has not used his long legs much as we are worried that he may be causing long term damage to his muscles/back etc if he is using them incorrectly.
February 2009 - after discussion with various people we have been told that Nottingham are to make new limbs as and when required until all care is transferred to Selly Oaks. They are in the process of ordering a new liner for his running legs, making new sockets for running and walking limbs so hopefully he will be walking tall again in a few weeks.
I will be posting a video of Edward using his myo arm, it is quite a nice piece of equipment and hopefully we can get Edward to tolerate it more and more, the only problem, once again, is getting appointments to have it stretched, because Edward will not wear it if it is uncomfortable.
March 2009 - Edward is to get his legs back next week from Nottingham, unfortunately he is going into Hospital for the tissue expanders on Friday so we will now have to see how it goes. He has a 2 abcesses, one after the other on his right leg.
March 20th 2009
Edward had 3 tissue expanders inserted and had a 2 night stay in BCH. It was nice to see everyone. He returned the following week for a wound check and 2 were ok'ish and the right leg was quite 'sloughy'. Swabs were taken and they were re-dressed.
The following week the 2 on the left side are completely healed, the right one is looking worse so Dad and Edward returned to BCH, it was re-dressed and 'Intrasite' was given to apply to the wound.
Friday 3rd April - Edward informs us that his right leg feels warm, we phone the on call Plastics at BCH and are advised to return to the A & E Dept the following morning at 9am, early start!
Saturday 4th April - We arrive at A & E and told Edward has cellulitis and needs to be admitted for IV antibiotics(Edward got quite upset as he thought he would miss Easter), unfortunately for Edward this is not easy as he has no access (to veins) via the usual routes and he is to have a general anaesthetic to get a 'line' into his neck to administer the strong antibiotics required. He goes to theatre around 11pm. On Tuesday it looks like the tissue expander is working its way out of the skin and we are advised he will have to return to theatre to have the expander washed, replaced and stitched, this takes place on Thursday midnight. The following week, (yes we are still in the Hospital) it is decided that the 2 expanders on the left side can be inflated with saline, one is inflated and the other expander entrance cannot be found. Edward had a scan on Wednesday to look for it and it appears to have turned, he needs to go back to theatre to have it put back into place and this happens on Friday 24th April - We are finally discharged Sunday 26th April, no offence to the wonderful staff but we were ready for home :-)
Thursday 30th April - Edward has been back to BCH to have one expander filled on the left leg and all is looking good with all 3 expanders and everyone is hopeful the right leg expander will do good and be ready to be filled soon.
June 8th 2009 - Sorry for not keeping you all up-to-date but Edward has been keeping us rather busy!!!!!!!!!!!
May 25th - It looks like the tissue expander is beng expelled, after speaking to the Plastics Team at BCH it is decided we will go down to A & E next day.
May 26th - He is seen in A & E and agreed the expander is coming out! Rather than Edward sitting in Hospital waiting for theatre we will go home and return tomorrow!
May 27th - Back at BCH - Burns Ward for 11.30, that is a nice reasonale time! Edward is going down to theatre this afternoon to have the expander in his right leg removed and the 2 left ones expanded. He goes around 3.00pm and is not back until 6pm. It is good news - they have managed to cut out the scarred tissue with enough skin from the tissue expansion to cover the gap, this is really good news as this is the side Edward gets most problems with. He is quite sick and tired when he returns and does not really wake. He has to try and keep the right leg pointing straight down toavoid splitting the stitching.
May 28th - drains are removed and Edward is allowed home :-), the Burns Ward was very nice and peaceful but still we are all ready to go home. He is to return to the Outpatients Dept June 3rd for removal of dressings.
Here is a picture of the scarring that causes the trouble and after surgery
The leg is now much smoother with a lot less scar tissue
On Friday 19th June Edward will be admitted once again to BCH for the final operation to complete this journey to hopefully prevent further problems with ulcers/abcesses. Over the last 3 months Edward has had unplanned Hospital admissions, infections, IV antibiotics, become needle phobic - although we are working on that one! He has had fluid pumped into his tissue expanders and been unable to walk or get about on his own and he has complained very little.
Throughout all of the above Edward has remained his happy, strong self, knowing the temporary boundries set by the expanders and accepting that he will once again have to learn to walk on the legs he has been unable to use since the insertion of the expanders. He is delighted with his right leg, with understanding beyond his young years. He continues to inspire all those who meet him.
Monday 15th June 2009- I am sure that we have mentioned how supportive the Meningitis Research Foundation have been and yesterday we had a visit from Shirley, who it is always a pleasure to see, she is the link between people who have been affected by Septicaemia and Meningitis and the Health Professionals who can find the answers, we have given our permission for William and Edward to help provide answers in the future if they can ever be of help.
August 2009 - Meet Andy, Edward's new Prosthetist at Selly Oaks in Birmingham. Here are Edward and Andy having a first (and hopefully final) fitting for new slipper legs. Edward is returning to pick up the finished article on September 2nd....and then the hard work begins again as he takes to walking. He will be using muscles he has not used in months.
Ohh sorry, such a lot still happening, we have come to the conclusion that Edward will keep us busy for many years to come!!!!!
JANUARY 2010 - We took the very hard decision to go public with the news that Edward is being very let down by the NHS, or to put it another way, the NHS are not giving Edward the best chance of achieving his maximum potential. After The Sun ran a story Denis Wise donated £10000 to provide Edward with running legs from PACE, we have now been attending PACE since February and we now have real evidence as to what Edward can be provided with from a Private prosthetic Centre to that what the NHS provide, the difference is unbelievable.
This is the pin system that PACE recomended, this will enable Edward to put his own prosthetic legs on and take them off, mirroring our aim of ensuring Edward is as independant as possible. Edward is able to do this.
Below, Edward taking his first steps on the new blades, he did comment on how high he felt, but true to form took to them like a duck to water.
PACE have ensured throughout Edward's visits that he is not rushed and that all Edward's problems are addressed individually and rectified such as scarring problems, this has been addressed with softer liners.
On December 18th 2009 we sent an appeal to DCPCT asking them to reconsider treatment at a non-NHS centre, they have finally made an appointment for the 18th March2010.
Well it was bad news. We attended a meeting consisting of myself, Steve and 3 members from Selly Oaks and around 6 members from Derbyshire County PCT, not really helpful for mere mortals like ourselves, needless to say the Doctor had really already made his decision before we walked into the room, due to the impending upheaval of the current government, wasting both our time and theirs.
In January 2010 we also made the very difficult decision to move Edward's surgical care from Birmingham to Nottingham, which was purely down to logistics, Edward did have the final say.
Throughout the year Edward has done remarkably well on his running blades, he is never off them!!! And even more bizarrely (and this is written in retrospect May 2011) THERE HAVE BEEN NO ALTERATIONS WHATSOEVER TO THE LEGS, THEY ARE A PERFECT FIT, UNBELIEVABLE CONSIDERING THE SUPPOSED MORE FINANCIALLY SOUND LEGS NEED CONSTANT FITTINGS AND CHANGES. Grrrr.......yes it makes me angry. The only problem we have had was caused by Edward who, after a few months, wore the sole out, having to be very money savvy we took them back to the NHS who replaced them with soles that lasted.........................................ONE WEEK, so we used our initiative and took them to the local cobblers who for £10 put on great soles.
Edward attended Nottingham Hospitals for one year before we felt that we could not continue with the constant let downs, namely being seen for 5 appointments throughout the year and not once did he see the same Doctor, having an op organised and the Consultant who performed it did not meet him until he was in theatre, not being marked up for the op and subsequently a different area being operated on and the final straw, a follow up appointment with yet another Consultant. He is now back under the care of the brilliant Mr Richards and his team at BCH.
But we must commend the skills and patience of the Anaesthetist at Nottingham City Hospital, togehter with the help of the Clinical Psychologist they helped Edward conquer his fear of anaesthetics and the brilliant man even got a vein on the day.
May 2011
Where are we at now?
It has been many months since I upadated this site, mainly because we have got back into the swing of our new life.
Edward is non stop on his running legs and is a star on them, he says that if he had not had menigitis he would not have his legs and he loves them!
He loves his bike, but unlike the normal push bike you buy off the shelf this one is bespoke and cost over £1000 :-( unfortunately nothing is cheap.
He is back under the care of Mr Richards and is due to go into Hospital for further scar revision on the 17th May 2011.
Edward will be going up to 'Big School' in September and we know we have many challenges to come, but, like always, we will take them in our stride and deal with them as best we can.
Finally, a Big Thank You once again for all the love and support shown to Edward, it is priceless and we mean that from the bottom of our hearts. X
TUESDAY 17TH MAY 2011
Edward was admitted to BCH today for planned surgery for scar revision, and a bone shave. It was like going home, seeing many familiar faces who were so very welcoming, thank you, it does mean a lot.
Edward had his surgery at 3pm and came back around 6pm, its a long time with a lot of worrying, but made a little easier knowing all the professionals were fantastic people. Edward made a new mate, the Porter, who made Ed laugh lots :-), the Anaesthetist managed to do an injection (Edward has a serious gas phobia), Junior Sister, Nurse Rachael, did lots of chasing to get Edward his pre-med in tablet form and all went really well, with nurse Tracey making sure he was comfortable.
WEDNESDAY 18TH MAY 2011
Edward has done really well and managed with only one Ibuprofen today and fingers crossed all is looking well. Back to see Mr Richard's Team next week......