#AllforJoe
Joe's story...
Our Amazing Son Joe was born on 12th January 2008 weighing a surprising 5lb. We were in absolute shock as we were told at 26 weeks to terminate our tiny baby as the Drs did not believe he would survive due to huge abnormalities that no-one really understood, we were told even if he survived birth he would soon pass away!
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So there he was... our tiny baby, our miracle!!!
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​​Joe was clearly a fighter. Joe had more tests, scans, needles and prodding by every Dr in the land but still no-one could tell us what was wrong with our thriving little boy.
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It was clear Joe had some form of Achondroplasia (Dwarfism) but apart from being tiny he matched not one of the hundreds of types.
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Infection after infection cost Joe many stays in ICU but as always he bounced back. A random assessment on one of his stays found he was going into heart failure with not 1 symptom... so within months Joe, aged 5.5 years had major open heart surgery at the Freemans to ironically fix a huge whole in his heart. Of course he powered through it all and soon recovered... only to then be told he had a very poor immune system that required weekly blood infusions to keep him alive - stem cell transplantation was not an option due to no-one knowing why his immune system was failing! The finest Dr in the land was sat with his head in his hands, desperately checking Joe's blood results and continually saying he was so poorly on paper that he needs to be in ITU... yet Joe was happily sat playing with his tractors and by now smashing his swimming lessons! We have a Super Hero on on hands!!!
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Infusions commenced - they were painful and took 3 hours but as always Joe adjusted and the biggest issue was fitting them around his now huge swimming schedule. Joe remained very poorly on paper but kept defying the Drs!!!
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Joe was now hugely advancing with his swimming. He was invited as a guest to a few galas, which he won and was then given a wild card to the English Nationals in Manchester... In typical Joe fashion... he won!!! Yet remained so humble and thankful to be involved.
Joe was winning all sorts and was now a fully fledge member of Richmond Dales Para Team and of course the Para Development England Team... sooooo proud. This came at a cost. 2 hrs of driving with 2 hours of training, 5 times per week with events at the weekend. Joe also started running 5km.
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At the age of 11, Joe had a cheeky check up at Sheffield childrens hospital where they casually told us Joe needed a bilateral Hip rebuild as neither of his hips sat in their sockets as they had worn away... I mean imagine the kid smashing all swimming comps and caning 5km being told that!!! The scans didn't lie, a few months later Joe was having major surgery on his hips to rebuild them. This surgery was hard... Joe was in so much pain and spent a lot of time in Sheffield. He was put in a bilateral hip cast from chest to feet and remained completely immobile for 5 months. This hit hard for Joe but in true Joe fashion soon as the cast was off he was smashing physio and learned to walk again... sharpish returning to the pool to regain his titles and spot with Swim England!
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Then there was Covid!!!
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Joe spent months in shielding due to his barely functioning immune system making him such a risk. We bought him a treadmill and he quickly regained his running skills smashing out 5km every day, spurred on with the promise of £1 per km for Richmond dales... it turned out to be a very expensive lockdown!!
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This continued through the 2nd lockdown and at the end, Joe (aged 14) somehow managed to get walloped on the head at school with the footy (surprising really as the kids never use to let him play). Quick visit to A+E with suspected concussion... CT scan done and boom... multiple encased brain tumours with 1 significant one which was now swelling thanks to the footy... again absolutely no symptoms or pain leading to this point!
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Blue lighted to the RVI, Scans, biopsies... every man and his Student and no-one has a clue what they are or how they have formed. 12 hours of brain surgery took its toll and now a dense right sided weakness to his upper and lower limb... 1 month after the surgery with still no answers, countless tests and ongoing physio and Joe was having weekend leave to Richmond to get back in the pool. Joe could not walk at this point and relied fully on his brilliant Coach Zoe who patiently got Joe moving in the pool again! We have never seen anything like it. Joe still couldnt walk, was an inpatient at the RVI undergoing so many invasive tests and treatments but here he is setting and smashing his swimming goals. 5 months later and Joe is free and now with a diagnosis of a very rare Achondroplasia (non reported in the UK, and only 21 others in the World). Sadly this diagnosis linked all of Joe's conditions over the years together and his care team were convinced the brain tumors were part of the Achondroplasia. Joe was 15 now and was told the care team didn't know how to treat his tumors if they came back, nor how to stop them returning. This hit Joe hard, he didn't show it though, he kept training hard and always had the biggest smile and infectious laugh. Joe was so humble and kind that you would never know he was dealing with so much pain and fear.
Still with no use of his right hand and very poor, limited mobility... Joe fought hard and was soon representing swim England again and setting new PBs. Even with the fatigue from his tumors and damage that had been caused, he somehow got bk to training 6 days a week!!!
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Aswel as Joes swimming, his other passion was Football... he loved the Boro and was a proud season Ticket holder at Middlesbrough FC. Joe was desperate to play footy as he often played with his cousins so we found him the most Amazing club at Boro Rangers for youngsters with disabilities. What a team! Joe was accepted and loved immediately and to our surprise was an incredible football player, quickly gaining the respect of both kids and adults who played earning himself the name of 'Joe the warrior Field' as he had absolutely no fear of taking on anyone despite his small stature. Joes passion for playing football shone brightly and we have never seen such support and team inclusion anywhere. Again Joe remained humble and showed his team mates kindness, support and incredible friendship which was returned to Joe in bucket loads!
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Joe was an absolute inspiration to all who knew him and so very loved. Sadly, the world is not always kind.
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Joe endured many acts of bullying at school. He tried so hard to be accepted and included but as always he was either bullied because of his physical disabilities or if the kids eventually let him join in they would taunt him for being disabled... the threat that Joe 'matched' and on many occasions 'out played' his abled bodies team mates made Joe more of a target, eventually leading to him not joining in.​
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Sadly, when Joe turned 16, his health continued to baffle all of his care teams and he began to realise how poorly he was and also that his life was based on hope that he would remain well. He quickly realised no-one knew how to control his condition and that he could lose all he worked so hard for without warning. Joe sadly decided enough was enough and that he wanted final control of his decisions and life. Joe sadly took his own life on April 1st, 2024. Breaking everyone heart into a million pieces!
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Throughout Joe's life, he was constantly met with exclusion, told he wasn't good enough and that there was no place for him or others like him. We travelled far and wide to change this for Joe and we want to help people like Joe to have access to activities alongside abled bodied people and clubs without having to travel for hours each night. The truth is this world wasn't good enough for Joe and we want to change that for others like him whilst telling the world our Joe's remarkable story of passion, determination, having no fear and chasing his dreams. After all what is life without a dream?
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We are so so proud of Our Amazing Joe - our Superhero!!!
