Scat offers children and young adults who have had amputations resulting from bone cancer, access to the best technology available in the manufacture of artificial limbs.
An ongoing fund of £250,000 has been committed to this particular area of cure. Scat is able to fund C-limbs, which enable high performance activities, and also special crutches and wheelchairs not available through the NHS. This fund attracts applicants throughout the UK who have otherwise failed to find the level of support needed for such disability.
Kim was only 13 when she was diagnosed with Ewing’s sarcoma. She had been experiencing a pain in her calf area every time she would walk to school.
On 27 April 2015 it was so bad that her calf had swollen and become very red. The school contacted her Mum and advised that she should be taken to A&E as ‘they had never seen anything like it’. At first they thought it was a sports injury, as Kim is a very sporty person, and it was put down to being a torn calf muscle but, when she then began to develop sweats over the next few days - an ultrasound was carried out whereby it revealed a much more serious issue. Kim had a tumour in her calf muscle.
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"I am walking freely and confidently, keeping myself active just like I used too and doing things a teenager does! Having fun!"
"This was confirmed by an MRI on 13 May 2015 and I started chemo on 11 June 2015. Six rounds of chemo before surgery was the protocol, then surgery, then another twelve rounds of chemo. Those first six rounds caused discomfort, sickness and fear but was something I knew I had to endure as it was supposed to help me - I had to fight through it.
"Unfortunately, the chemo didn’t work on my tumour, with only a 5% reduction in size. It was too big to be removed on its own. The only way to cure my cancer was the amputation of my right leg above the knee. This happened on 23 October 2015.
“I remember waking up from the surgery in so much pain… that day will always leave me traumatised as it’s the day my life changed in the way I thought was for the worst at first. Turns out life hasn’t been all bad! Along with the negatives came positives, positives that have made up for the negatives and shown me more to life than I once thought.
"One of these positives was the huge help provided by SCAT - without them I wouldn’t have progressed as quickly as I have! They provided me with a kick start grant which inevitably helped fund the microprocessor leg I needed to open up wider opportunities and give me a chance of living a reasonably normal life again. With the help of SCAT and Dorset Orthopeadic I received a Rheo XC in April 2017 and I am incredibly grateful for this. I am walking freely and confidently, keeping myself active just like I used too and doing things a teenager does! Having fun!
“I can honestly say this leg has changed my entire perspective and experience of life - without it I wouldn’t be doing anywhere near as many things I am doing now. For that I can’t thank SCAT enough for the help they’ve given me and it shows no matter what situation, there are always people to help and that’s something I highly appreciate in this world. I now live a fearless, confident and fun life just as a teenager should!”
When Anna was 11 years old she was diagnosed with Ewing’s Sarcoma just below her right knee.
Anna had chemotherapy and surgery to replace the affected knee and shin bone, but sadly a resistant infection meant that Anna had to have her leg amputated. She then managed with crutches to get around, until she was able to have a C-Leg fitted at Dorset Orthopaedic’s Midland clinic.
Anna's parents, Steve and Liz said: “We are grateful to Scat and Dorset Orthopaedic… despite losing her leg to bone cancer, Anna leads a full academic and social life!”
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"Four years ago, Anna was diagnosed with osteosarcoma just below her right knee when she was 11 years old.
"She underwent chemotherapy and had limb sparing surgery to replace the affected knee and shin bone. Unfortunately the leg didn’t heal and despite having skin and muscle grafts there was still a resistant infection and the metal had to be removed.
"Anna went to theatre expecting to have a big operation that would take a piece of muscle from her back to patch up the leg but when the metal was removed the ankle bones just crumbled and so the leg had to be amputated above the knee.
"Although the amputation wasn’t expected it was actually a relief as they hadn’t cut into her back and the leg was so disfigured and completely useless as Anna had never been able to even stand on it never mind walk for over 18 months. Following the amputation she was more mobile than before and was able to get about on crutches, however she grew painful bone spurs on the stump and was unable to tolerate a prosthesis, so for a whole year she hopped on crutches managing to get around school and start catching up with her schoolwork.
"Eventually she began wearing a prosthetic leg but really struggled with comfort and the strength needed to use it. This is when I read about Scat live life to the full project and enquired if Anna could be helped with the provision of a high performance limb.
"When we heard that Anna could get funding for this leg we were overwhelmed with joy and could really see the light at the end of the tunnel.
"It has taken a while to get going on the new super leg partly because Anna kept growing and needing new sockets but in the last few months she has really taken off. She wears the leg all day, it is comfortable easy to use and helps her whole posture she now walks with a natural gait and to top it all it looks great which is so important for a 15 year old girl.
"Just as Anna finished her chemotherapy, due to her bones being so fragile she broke her good leg, this leg didn’t heal straight and needed to be re-broken and straightened so as not to wear out her knee in the future.
"We are so grateful for this leg as it really has given Anna her life back she looks just like any other teenager and manages to do everything she sets her mind to. She is even reconsidering her future career options, Anna had always wanted to be a doctor but thought with her amputation it would be too physically demanding but now it seems possible after all. So we would like to thank Scat sincerely for opening up the world for Anna.
"Anna recently received her GCSE certificates and also won a special prize for English and the Special Head Teacher’s Award. Liz describes how “It was so emotional to see her walk up and down the stairs to receive these awards after all she has been through."
Latest news… Anna has been offered a place studying medicine at Liverpool University and Scat wish her well with her A levels!
Dilan Hayes was 11 years old when he was diagnosed with Osteosarcoma in his left leg.
Over a number of year he endured a range of treatments including chemotherapy and numerous surgical operations in hope that his leg could be saved. Unfortunately Dilan lost this battle and in 2011 he had his left hip and leg removed.
After contacting Scat in June 2013 the process of fitting Dilan with a Helix Hip and C-Leg commenced and in December, Dilan’s parents saw him ‘walk’ home – a very special day – back to his daily life with his friends at university.
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"Dilan was 11 years old and we were living in Germany when he first complained of a pain in his leg that wouldn’t go away. After being referred for a scan the results showed a possible Osteosarcoma in Dilan’s left femur. A very kind German doctor broke the news to us and from then things were not to be the same for quite a number of years.
"The first decision we had to make and very quickly was where to go for Dilan’s further tests and treatment. We knew that there was possibly a long road ahead so we decided to return to Ireland where we had family to support us through the next stages. In Ireland, Dilan attended Cappagh Orthopaedic Hospital and was diagnosed with Osteosarcoma of the left femur in March 2006. X rays showed a large tumour, and Dilan commenced 9 months of chemotherapy at Our Lady’s Children’s Hospital Crumlin.
"Initial treatment centred on treating the cancer, and removing the tumour. Dilan was assessed as being suitable for limb salvage using the Ilizarov technique. Although we knew that this was pushing the boundaries of what had been done previously, as a parent it was certainly worth a try and the amputation was not something we wanted to accept if there was an alternative. Over the course of the next 5 years Dilan had multiple surgeries, (so many we lost count) to facilitate the process. However things did not go to plan, Dilan went through a lot over the next two-three years. Another complication with this technique is the risk of infection. Dilan had a number of very serious infections, requiring hospitalisation and treatment with IV antibiotics.
"Dilan kept going with the external frame for over 3 years and had a brace for a further 2 years. However there was still a considerable gap between the length of the left and right legs, so that even with a built up shoe it was almost impossible for him to walk on the left leg. All this time he walked with crutches.
"Towards the end of 2010 we were presented with another problem the non union of the old and new bone,at the hip joint. The new femur bone had grown but was too soft and was not joining with the hip bone. After a number of attempts and wearing of a cast (Dilan was unable to move for six weeks. He was confined to home, couldn’t go out to school and couldn’t sit etc.) the outcome was still not good. Further attempts caused more damage and there was little choice but to remove the temporary plate that was in place.
"The process hadn’t worked and the only option for saving the leg was to go back to the beginning and start the whole process again. At this point Dilan decided he had been through enough and requested that he be referred back to Cappagh Orthopaedic Hospital for an amputation. The surgeon assessing Dilan concluded that a full disarticulation was necessary. Dilan was scheduled for amputation in July 2011, the left hip and leg were removed.
"Initially after the amputation Dilan felt relief that the surgeries were over and that he could plan his life again – school, exams and music festivals! In fact one of the first things he did was attend the Oxigen Music festival, complete with tent and single Wellington boot etc. Dilan has also been lucky to have very good and considerate friends who include him in all the usual teenage activities.
"After the amputation Dilan tried a standard prosthesis but found it very difficult to use ongoing (particularly in crowded situations as in school and college). We researched other options and found the c-leg. Reviews for this prosthesis suggested that it was a much better option for someone with Dilan’s level of amputation. We looked at clips on You Tube of users wearing the c-leg and the also at the Otto Bock website. Dilan even got a c-leg on trial for a few weeks to try and see if it made a difference. He found the c-leg a much better option, allowing more ease of movement and also he could wear it for longer periods of time. We applied to our local heath authority for funding. However this type of leg was not one that they would normally fund and the application was rejected by them despite appeals etc.
"We got in touch with Amputee Ireland to ask advice, we wrote to local representatives to champion Dilan’s application as we appealed the decision but unfortunately the application was still turned down. In desperation I searched for other sources of funding, I eventually came across Scat and read how they helped other young people in Dilan’s situation. I wondered if Scat might consider an application from Dilan. I contacted Fiona Foley at the Irish office of BCRT (Bone Cancer Research Trust) who very kindly passed on Trish McEntee’s details at Scat.
"I approached Trish with the background to Dilan’s application. I was amazed at how quickly Trish responded and at how the team at SCAT took an interest from day one. We forwarded the relevant medical reports and waited to hear. The day we got the message from Trish to say that funding was approved was one of the best in the last seven years!
"Dilan recently travelled to Dorset Orthopaedic in Burton where he was fitted with a C-leg. The team there were amazing, efficient and caring, the physiotherapists advice was excellent, practical and very focused. Dilan is now getting used to the C-leg and all it offers.
"We cannot thank Scat and all the supporters enough for all that they have done for us by allowing Dilan to have access to this prosthesis. Seeing Dilan stand again and walk without crutches was something we had really thought would not happen.
"Thank You Scat!"
Edward had his leg below the knee amputated due to osteosarcoma when aged only 17. Despite this he has emerged as a very talented wheelchair tennis player.
After chemotherapy treatment, eventual amputation, more hospital treatment and time recovering, Edward has achieved considerable success in his life. Success as a tennis player is important to Edward and he has already competed at the highest levels. Edward has reached his highest world rankings of 90 (singles) and 89 (doubles). More importantly, his recent four year cancer scan was clear!
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I'm Edward Holt and I'm a wheelchair tennis player currently training for 2016 Paralympics in Brazil. I have played tennis since I was 8 years old. Unfortunately I was diagnosed with a form of bone cancer called Osteosarcoma at 11.03am on September 10th 2009. Osteosarcoma is a rare form of bone cancer in teenagers.
“I spent a year in hospital having chemotherapy and on New Year’s Eve 2009, I had my below knee amputation. Two weeks later I was back in hospital for more Chemotherapy until 28th May.
"In May 2010 I went to the Bath Paralympics Talent Day and was picked out for wheelchair tennis. After I finished my chemotherapy I spent all summer recovering. At the end of my chemotherapy I spent time recovering.
"Unfortunately I suffered severe discomfort with my stump and as a result had to have two further operations during the yearand I was forced to give up my course at Sheffield Hallam due to another operation. During the early part of 2010 I decided to enter wheelchair tennis tournaments and my potential was picked up by the Head Great Britain Coach. I went to America on my own to play a tournament in which I beat the USA No. 6 and realised I had a passion and a talent for wheelchair tennis and decided to commit myself to take it as far as I could.
"I then started at Leeds Metropolitan University studying Sports Performance as a TASS athlete which enabled me to train five days a week with a good support structure around me and I also trained once a week in Sheffield with other Great Britain Wheelchair tennis players.
"I won my first major tournament title at Nottingham, second draw Men’s Singles beating the 150th ranked player in the world from the Netherlands. My long term goal is to reach the 2016 Paralympics in Brazil. My aim at this time was to play as many tournaments as I could, to get into the top 100 world rankings and top five in Great Britain.
"I currently attend Leeds Metropolitan University as a full-time athlete and have already reached the semi-finals in the Men’s Doubles in Italy and in the singles in Spain. I also won the Men's Doubles in Turkey and Spain (2012-13) and played two British tournaments, beating the world number 63. I have reached my highest world rankings of 90 (singles) and 89 (doubles).
"My aim is to travel the world with the sport I love playing; after everything I've been through, I am taking every opportunity presented to me and making the most of it. I have found myself in a parallel world that I didn't know existed. Nonetheless I'm willing to make the most of it. Losing my leg and playing wheelchair tennis has enabled me to meet a variety of people and inspired me to try and reach the 2016 Paralympics.”
Edward has also had a prosthetic blade fitted which will enable him to run again. He is hoping that after his most recent operation his leg will be comfortable enough to start running and doing the activities he used to do.
Edward added: “I was a keen sportsman before my illness. I used to play football and tennis and I want to continue being the athlete I used to be. Having the blade will enable me to try other Paralympic sports and most of all start running again.”
More importantly, Edward recently had the all-clear on his four year cancer scan!
In 2008 Jean discovered a lump by the ball of her foot, which after x-ray and a biopsy, was confirmed as a soft tissue cancer called a Sarcoma.
The only treatment for the cancer was amputation and Jean had a section of her left leg and the knee amputated. After the operation Jean needed a special limb called an 'Echelon' foot – unfortunately it was not available on the NHS. However, Scat was able to fund Jean's prosthetic foot and since then she has made great progress.
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"In 2008 I discovered a lump by the ball of my foot. Thinking at first that I must have stubbed my foot, it took a while to realise that the lump had not disappeared. After an X-ray, which failed to show anything suspicious, I eventually had an ultra sound scan which showed a lesion. Afterwards a needle biopsy confirmed that I had a soft tissue cancer called a Sarcoma.
"The only treatment for this type of cancer is amputation – in April I had a section of my left leg below the knee amputated. This has been an eventful journey for myself and my family who have been wonderfully supportive throughout my experience. I have also had tremendous support from friends and my work colleagues in the Neonatal Intensive Care Unit at the Royal United Hospital in Bath.
"Where I live in Kingswood, Bristol it is very hilly so I find going for a walk difficult, but in 2010 I found out about a product called an 'Echelon' foot, which once correctly fitted, enables easier walking on slopes and hills. After discussions with the manager of my Disablement Service Centre I realised that due to budget constraints I would not get this foot on the NHS and they do not allow patients to self-fund upgrades for prosthetics.
"During a hospital appointment, Christine Millman introduced herself to me, she had been recently appointed as a Sarcoma Specialist nurse and I explained my situation to her. She was very supportive and promised to do all she could to help. Later Christine introduced me to Trish McEntee from the charity Scat to see if they could help and I was very fortunate to receive funding for an Echelon foot. I am now trialling the prosthetic foot, with adjustments being made to suit my mobility needs. I feel so lucky to have received this help which has give me increased mobility and confidence.
"One of our favourite family pastimes is walking the dog with our granddaughter and now I will hopefully be able to walk greater distances over variable terrain with less discomfort.
"Many thanks to Trish McEntee and her team at Scat and the numerous fundraisers who have given me this wonderful gift of increased mobility. Needless to say I am now a fundraiser and will continue to contribute whenever possible."
Jean’s recent update…
"My comfort and mobility has continued to improve when walking, especially on the slopes and hills giving me new experiences and a better quality of life!
"Last September I went on holiday with my family to Cornwall, one of our favourite places to visit. I went with my husband Trevor, daughter Liz, granddaughter Ruby and our dog Buster. It was a little cloudy so we decided to go on a coastal walk rather than risk a shower and a run from the beach.
"After looking at the map we decided to go to the National Trust beach of Kynance Cove.We have read about this fantastic location and it certainly lived up to our expectations. We parked at the top of the hill in the NT car park and realised that as the tide was going out we could access the cove by walking down the winding path and across the rocks to the beach, all the time having terrific views of the sea.
"The steep walk down to the beach and climbing over the rocks would not have been possible without my new foot, it was such an achievement for me and we were all delighted with my progress. We sat outside the café on a bench and we had a well deserved coffee and hot chocolate, whilst enjoying the fabulous views of the sea shore. The weather was not really improving, so after discussing what to do next, we decided to attempt the much longer walk to the Lizard peninsula. This is a wonderful walk, truly up and down dale, crossing streams and climbing over numerous styles with fabulous views of the coastline. It took us a few hours to complete but we all enjoyed the stunning Cornish scenery! At the Lizard there was the welcome site of a restaurant and we ordered lunch and relaxed with a drink.
"The walk back was also interesting as we walked back through the village and cut through different walkways leading to an old railway track and eventually ambled back to the NT car park. This was a welcome sight indeed after the longest walk since my operation!
"Afterwards, we all realised that if I never had my new foot this undulating walk would not have been possible for me and I am so grateful to Scat for sponsoring my prosthesis. I will of course continue to support Scat and give donations whenever able.
"Thank you again Trish McEntee and your wonderful team and for all the marvellous opportunities you provide for your patients."
Kelly was a 15 year old, sporty teenager, when she was diagnosed with Osteosarcoma in her shinbone.
Osteosarcoma is a rare form of bone cancer and Kelly needed urgent chemotherapy to check the disease. Unfortunately the cancer was so advanced that it was necessary to amputate her leg above the knee. A very determined person, Kelly has kept up her sporting activities and used them to raise considerable funds for charity.
Recently Kelly heard about Scat and has now been fitted with a new C-Leg, which she says has improved her quality of life.
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"When I was 15 years old I was diagnosed with cancer. I was a very sporty teenager and attended PE classes three times a week. I discovered a lump in my right shinbone and didn’t think much of it, however, although I went to the doctor to get it checked and was told it was an internal bruise, it was eventually diagnosed as bone cancer.
"I had lots of tests and a biopsy and on the 1 August 2003 I got the results, which identified a rare form of bone cancer called an Osteosarcoma. The cancer was in my right shinbone and I was told that I would need chemotherapy and an operation, but they didn’t know how severe my operation would be at that stage, but it could result in an amputation. I was stunned and upset and my mum and dad who were with me were equally shocked – that was a day I will never forget!
"My chemotherapy started on 7 August, only six days after I had been diagnosed. Everything happened very fast and after three sets of chemotherapy I had to go back in to hospital for more tests to see what operation I would need. On the 16 October 2003 I had an above knee amputation to get rid of my bone cancer. In November I had a course of another three sets of chemotherapy, finishing my last on 31 December 2003. This meant I was going into 2004 cancer free which made me delighted.
"As an amputee I don’t let things hold me back, if anything I think it drives me to do things I never would have done as an able bodied person. I am very determined and I always like to challenge myself as I think life is so short. I use my experience to raise money for The Bone Cancer Research Trust and I link this to sports. To date I have raised over £10,000 for the charity and embarked on challenges such as a five day trek around Cuba (2008) and a four day cycle from London to Paris (2012).
"I will never let my amputation hold me back, I may have to adapt the way I do things sometimes, but I will never be told I can’t do anything. Part of my ongoing challenge is fundraising for my own prosthetic limbs, and here is where I am forever grateful to all of my family and friends who continually support me in raising funds for my limbs.
"Recently Scat supported me in gaining a new prosthetic leg, which I am so grateful for. The new leg will allow me to get a new socket fitted and improve the comfort of my limb and the quality of my life.
"I really cannot thank Scat enough, because without supporters like Scat I wouldn’t be where I am today."
My name’s Anjni, I’m 19 years old (soon to be 20 in a few days) and I suffered from Osteosarcoma in my left leg femur which resulted in an above knee amputation of my left leg.
I was diagnosed with Osteosarcoma at the age of 10. It was pretty scary thing to go through at such a young age. I always thought why did it have to be me that has to suffer from this? What’s going to happen if I don’t get better?
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"There’s still plenty of opportunities in life after suffering from these horrible diseases as I have learnt. Be sure that this is not the end of anything and always stay smiling."
"My biggest question of all being a sports fanatic (football in particular) was will I still be able to play sports? However, I’ve come 10 years on and am living life to the absolute fullest. Ever since my illness and amputation I always believed in one quote “ I believe in being strong when everything seems to be going wrong. I believe that tomorrow is another day, and I believe I should do what I want, when I want as if there is no tomorrow.
"When I was getting treated in hospital I always heard from other people saying; “now that I have an amputation I can’t really do anything, I’ve stopped doing sport and physical activities.
"For me this was not an option. I made sure I continued to do sports one way or another with and without my prosthetic. My amputation has not stopped me from continuing my passion with sport, or limited my physical ability. I have gone on and am just finishing my 2nd year at university doing an undergraduate degree in Sports and Exercise Science, and have become a fitness instructor.
"I have also been driving for 3 years, which has given me great independance. I have been on many holidays where I have been unable to wear my prosthetic due to the hot weather. This has not stopped me from going out, into the pool or having to be covered up so no one could see my leg. I still went about on crutches and done everything as normal.
"There’s still plenty of opportunities in life after suffering from these horrible diseases as I have learnt. Be sure that this is not the end of anything and always stay smiling. The sarcoma team at RNOH were amazing whislt I was at being treated there. They were of great help and I couldn’t thank them enough for really helping me get through such a difficult time at such a young age."
Nicolas was diagnosed with Ewings Sarcoma at the end of 2011. In May 2012, Nick had his left leg amputated above the knee and was supplied with an NHS prosthetic limb.
The leg proved very basic and uncomfortable, requiring crutches for stability, but the NHS could not fund the cost for available high tech prostheses. Nick's mother contacted Scat and they provided funds for Nick to receive a C-Leg. The new leg made a big difference to Nick's life and he returned to full time education with confidence and hopes to resume his great love – cricket.
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"In August 2011 Nicolas, aged 14, woke during the night with severe leg pain. The next day I noticed some swelling just below his left knee. We went to our GP who decided that an x-ray was required. The x-ray was reported as being normal by the radiographer, the diagnosis being either a sporting injury or growing pains.
"Over the next few weeks the pain and swelling became worse so we returned to our GP who referred Nick for an urgent ultrasound scan. On 5th December 2011 we had the scan done. The radiographer indicated straight away that he had concerns about what he could see.
"The following day Nick had an MRI and CT scan. Our GP told us that the scans showed a form of Sarcoma involving the Tibia and surrounding tissue, but a biopsy would be required to confirm this.
"On the 19th December Nick had a biopsy at the Royal Orthopaedic Hospital in Birmingham. We then had a 2 week wait for the result. On the 3rd January 2012 I received a phone call from Mr Simon Carter, Consultant Orthopaedic Oncologist, to confirm that Nick had Ewings Sarcoma, a form of Bone Cancer. Mr Carter explained to me that Nick would require Chemotherapy initially then limb salvage surgery to remove the tumour and replace the damaged Tibia.
"On the 15th January Nick began his Chemotherapy at the University Hospital of Wales in Cardiff. The Chemo was tough for Nick making him sick and tired but on the plus side the tumour had shrunk a little and the pain had nearly gone. After 3 cycles of chemo and more scans we received the devastating news that Nick would require an above Knee amputation to remove the tumour and ensure the best chance of cure.
"On the 3rd May 2012 Nick had his left leg amputated above the knee at the Royal Orthopaedic Hospital in Birmingham. After the operation Nick had to have another 9 cycles of chemo.
"Nick was eventually supplied an NHS prosthetic limb. He basically had to learn to walk again whilst receiving intense physio to strengthen his core muscles. This was hard and very tiring when you consider that Nick was still receiving chemo at this time.
"The NHS leg was okay but very basic and uncomfortable. Nick would often fall and had no confidence in it at all, and had to use crutches for stability. We were told by Nick’s NHS Prosthetist that there were higher tech prostheses available but that the NHS would not fund the cost. I began to do some research myself and was lucky to make friends with Nicola Maxwell on Facebook.
"Nicola’s son Kieran also had a leg amputation as a result of Ewings Sarcoma. Nicola informed me about a charity called Scat which could possibly assist with the funding of a better leg. I therefore contacted Trish McEntee at Scat to find out if they could possibly help. Incredibly after just a short period in time Trish gave us the wonderful news that the charity would provide the funds for Nick to have a C Leg.
"Within a couple of days we were making the trip down to Dorset Orthopaedic in Ringwood to meet consultant Paul Neve. Paul made all the necessary measurements and checks and within just a few more weeks Nick was supplied with a C Leg. The C Leg has made such a big difference to Nick’s life. His walking has greatly improved and he no longer needs crutches for balance. He now has the confidence to attend school full time and also attend various sporting events, with large numbers of people present, without the fear of losing his balance and falling over. Before his diagnosis Nick enjoyed playing cricket and he now hopes to return playing in some capacity soon.
"We would like to conclude by thanking Trish McEntee, Scat and all the fundraisers for their generosity and kindness to make this possible. We would also like to thank everyone at Dorset Orthopaedic for helping Nick."
Olivia was diagnosed in 2011 with Osteosarcoma, a rare cancer that mainly affects young people.
After blood tests and an MIR scan she was given the devastating news that she would need her leg amputated above the knee. Olivia had her first prosthetic leg fitted on her 15th birthday and although she was pleased, it did not quite keep her up with her busy lifestyle. She had her heart set on a state of the art Genium limb and that is where Scat were able to help!
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"I was diagnosed in 2011 with a rare form of cancer known as Osteosarcoma. This cancer mainly affects teenagers and young adults.
"My diagnosis was swift, after seeing a doctor out of hours I was prescribed a course of antibiotics.A week later I had a follow up appointment with my GP. The symptoms of pain and swelling in my lower right leg had not changed and the GP sent me to the hospital for a blood test and an ultrasound. I had the blood test that night and stayed overnight at the hospital until I had the ultrasound the next morning followed by an MRI scan. Within hours of the MRI scan my mother was told of my diagnosis. I was then taken into a room with my mum, dad and my step mum, and the doctor told me the bad news.
"A few weeks later I travelled to Birmingham to have a biopsy to confirm the diagnosis. Just over a week after my visit I started chemotherapy treatment at Alderhey, Liverpool which lasted 11 months. After four months treatment my cancer had spread too much and the decision was made to amputate my right leg above the knee. I was absolutely devastated but had to continue with my treatment.
"After the amputation, chemotherapy continued until December when I was given the all clear and I was finally discharged from hospital. I had a new prosthetic leg fitted on my 15th birthday – a basic NHS leg and although it was enough to get me around it wasn't quite enough to keep up with my busy lifestyle. It restricted me in what I could and couldn't do and as a 15 year old I wanted to keep up with my peers and enjoy my life to the fullest.
"I had been made aware of private prosthetic legs by other young cancer amputees. One mentioned Scat, a charity that helps fund prosthetics limbs. I'd had my heart set on the best knee joint, as the Genium. Without Scat I wouldn't have been able to get this leg, it has made a massive impact on my life. I'm able to walk with ease and not be concerned that my knee would give way and make me fall. I also have less pressure on my joints which reduces the risk that I will need knee and hip replacement at a young age. My new leg allows me to keep up with my activities and peers and I even work 10 hour shifts at my local pharmacy where I stand all the time!"
Sarah, a single mum, had her left leg amputated above the knee in 2012.
Up until Osteosarcoma, a cancer of the bone intervened, she was an active mum, spending a lot of time with her son walking in the park, the forest and on nature trails. Sarah has had two NHS prosthetic legs provided, but was still limited in her activities. Fortunately Scat was able to provide a high activity C-Leg. This has made a significant difference and she and her son are now able to be much more active together.
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"My left leg was amputated above the knee in 2012 due to osteosarcoma in my knee. The news was devastating. I was a single mum with a four year old son and our lives changed overnight.
"Since my amputation I have struggled to participate in a lot of outdoor activities which has had a negative impact on both me and my son Oliver. Before amputation we were regularly playing in the park, walking in the forest and on nature trails, cycling and overall very active.
"I have received two NHS prosthetic legs over the last 2 years, the most advanced had a sensor knee However, the leg did seem to limit my activity and stability when attempting to pursue my previous hobbies. I am not a naturally coordinated person and have dyspraxic tendencies, so I knew I would not find mastering a prosthetic leg very easy. I wanted a leg that would allow me to regain the level of outdoor and physical activities I used to be involved in, especially with my son. I missed walking along holding his hand, something I used to take for granted before my leg amputation.
"Earlier this year Scat provided me with a higher activity limb with a microprocessor knee and I received a C leg via Dorset orthopaedic. I have also received some specialist physiotherapy support to help me use the leg which feels significantly different to my NHS leg. The most important difference is that the leg feels more stable and safe and subsequently that has increased my confidence and coordination when walking.
"The C Leg has improved my quality of life and allowed me to be more physical and active. I can now pursue my previous hobbies and interests and am more able to provide a stimulating and active childhood for my son without being dependent on others. I still have a way to go to master all the C leg functions but even in a short space of time the C Leg has made a significant difference to our lives. My son and I are both much more active and happy. Most importantly I am able to walk along hand in hand with my son and feel much more stable and able to do this now I have a C Leg.
"The confidence I have developed from using a C Leg has also given me the impetus to change my career and I will be starting an MSc in Occupational Therapy in September, as I am keen to help and work with and support other people with disabilities. I feel more confident to do this now my walking has improved.
"I would like to thank Scat for all their support and Dorset Orthopaedic for their expertise and professionalism and for giving improved freedom and independence to Oliver and me."
Tom was told that he had Osteosarcoma in his tibia when he was just 19.
He had always enjoyed playing cricket and it was while training that he first noticed the pain in his leg. Although Tom had a successful course of chemotherapy, it was not possible to save his leg. After the operation Tom found it difficult to walk with his prosthetic limb, but gradually got used to it. With funding from Scat, Tom has now been fitted with a 'Genium' leg. Not only has the new leg improved his general quality of life, but best of all he can play cricket again!
+ Read more of Tom's story
"When I was 19, during indoor winter cricket training, I began getting a pain in my knee and this prevented me from running and bowling. It was thought that the pain was ligament damage because it’s common in a young boy who plays a lot of sport.
"I went to see a NHS physiotherapist and had about five weeks treatment. However, the pain increased until it got to a stage where I was taking painkillers every four hours and walking became very difficult.
"My dad decided to take me to a private sports physio he knew in Cardiff. The physio, took one look at my knee and said that he wasn't going to touch it and he wanted me to go for an MRI scan because he could see there was a real problem. He told my dad that we could wait three months for a scan on the NHS or pay for a scan privately the following week. My dad opted to go ahead with the private scan, wanting to get me fit again as soon as possible.
"The following week, I was told that there was lesion on the tibia and it could be a bone cyst, the best case, or osteosarcoma, which would be the worst case. I went to see a specialist in Newport Gwent hospital for an x-ray on the following Wednesday and then a biopsy was booked in at Birmingham for the following Tuesday. However, on the Saturday in between, when I was at the cricket club, my tibia fractured. I had the biopsy as planned and a week later the results came in and it was confirmed that it was a osteosarcoma.
"Before starting chemotherapy, I had to have blood and kidney tests, which was bad enough, but chemo really knocked me for six. During my first two courses, spanning August to October, I lost three stone and felt ill and could not eat properly. When we went for my review and we given good news– the chemo had killed 99.9% of the tumour, but we were also told that they would not be able to save my leg.
"I was told that there were two methods of surgery – amputation or metal implant. I favoured amputation over the metal implant for a few reasons – mainly because once the leg has gone, the tumour has gone with it, whereas with the implant, there is a chance the tumour might still be there.
"I was given a week off from chemo before my operation and after the operation, I was a completely different person. I found my appetite again, having a McDonald's breakfast every morning in my hospital room for seven days! Even when I got home, and had the last of my chemo, I was eating and the chemo wasn't making me sick or ill at all. During all this time, even after losing my leg, I never lost the desire to return and play cricket again. It's what had kept me positive, knowing that one day, I would be doing what I've done since I was six.
"When I finished my fourth chemo treatment, I started physiotherapy to try and walk on a prosthetic leg. At first, it was very difficult because throughout the treatment and operation, I was non-weight bearing on my left leg, so I hadn't walked for over one and a half years. I had 3 months of physio and when discharged I was walking with sticks. I started walking with one stick and then, with no walking aid at all. As soon as I was walking with no help, I was back focusing on cricket training. I also took up golf, because it's a sport where you don't have to have much mobility.
"Since playing cricket again, I've played about nine matches. During one of those matches I had the ‘Genium’ prosthetic leg on trial. I scored 59 not out, so the leg had definitely helped! I also found it made a massive difference to my golf game, as the leg had a special ‘golf mode’ which was amazing. But the most important thing about the Genium leg was with my everyday walking, it was like a natural walk again."
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