Alex Able was diagnosed with an extremely rare cancer at the age of 29 and was told his treatment was ‘terminated’. Not giving up hope, his family is fighting for a new treatment plan
At just 29-years-old, Alex Able had his whole life ahead of him and was even looking to start a family with his wife, Elle. But just two years after the pair said ‘I do’ in 2021, doctors gave him a heart-shattering diagnosis, which confirmed he had one of the rarest forms of cancer in the world.
Alex, now 30 and an engineer who lives in Kent with Elle, 27, and their two cats, Socks and Sage, first experienced shoulder pain in September 2023, but as an avid gym goer, didn’t think much of it.
The pain persisted and kept him awake at night, so Alex pushed for an MRI scan, and in November 2023, the results came back clear. It comes after a doctor’s warning to people who drink even a ‘single cup of tea’.
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The initial results came as a sigh of relief, but by May 2024, the pain had only intensified. This led to another scan and devastatingly, a large tumour was found on his shoulder and near his spinal cord.
Surgeons managed to remove 90% of the mass, but 10% remained as it was too high-risk to disturb given how close it was to Alex’s spine. His tumour was sent off for testing and just two weeks later, he was given a shocking diagnosis.
“Our world came crashing down around us all,” Alex’s mother-in-law, Katie Bleach, 44, from Kent, said, who has been speaking to the media on her daughter Elle’s and Alex’s behalf.
Alex was diagnosed with a Rhabdoid tumour – an aggressive and rare form of cancer that typically affects young children. This type or the disease is so rare that Katie said there are thought to be around 11 confirmed cases in Europe, with Alex believed to be the first case in the UK.
“They [doctors] explained that Rhabdoid tumours behave like spider webs, fine strands that cling to whatever they can grab. Alex’s was dangerously close to his spinal cord, attached to muscles and nerves controlling his arm movement,” the distraught parent explained.
Four weeks after his initial surgery, the tumour had grown back to its original size. He underwent intense radiotherapy, every day for six weeks, in an attempt to shrink the mass. “The radiotherapy caused burns and inflammation to his throat, and he struggled to eat or drink. He was losing weight rapidly, but he kept pushing through,” Katie said.
He then went on to have chemotherapy, and despite the odds, “started to build himself back up”. At a halfway scan, small tumours appeared in his lungs, lower back, and shoulder bone, but as chemo continued by the end of December, the secondary tumours in his lung had halved in size and the patch in his lower back bone had gone.
The original tumour on his shoulder “remained stable,” and Alex and Elle started making plans for their future, including an exciting move from Kent to Shropshire. Alex finished chemo in March 2025 and celebrated his 30th birthday in the same month after a challenging few months.
Heartbreakingly, at the end of April, Alex became unwell and experienced strange sensations in his legs and pain in his back. In just a few days, his health deteriorated, and further results revealed that the tumours in his lungs had returned. In addition, there were new growths in his lower back, which impacted his mobility, and two small lesions were in his brain.
Katie shared: “Over the coming weeks, difficult decisions were made; they pulled out of their dream home, Wills were drawn up, conversations about his declining mobility and future care were had.”
Alex underwent radiotherapy to his brain and lower spine, and intense physiotherapy to help him walk again. Chemo also resumed, but the morning after the first of his third chemo cycle, Alex woke up and couldn’t feel his legs. He had sudden paralysis from his chest down, and an MRI revealed that two new growths were found in his spine, bringing the total to seven tumours.
Katie shared that before his diagnosis, Alex and Elle, who have been together since 2019 and got engaged just nine months later, “loved travelling, eating out, going on adventures, went out with friends a lot and were film buffs”.
She added: “Their hopes for the future were aligned; they were desperate to move to Shropshire, and both wanted to live in the countryside. They wanted a more outdoorsy life and were thinking of starting a family. Their adventures were only just beginning.”
On her daughter’s reliance, Katie added: “She’s the strongest. and the most courageous girls I know. She’s been an absolute tower of strength to Alex, giving him nothing but love and encouragement with a constant belief that they’re going to come through the other end.”
Due to the rarity of Alex’s diagnosis and it not commonly being seen in adults, receiving treatment has been challenging. On July 11, Alex and his family were hit with the gut-wrenching news that his cancer was “now uncontrollable” and that his treatment was being terminated.
Devastated Katie shared: “Despite what they might think is best for Alex, they aren’t delivering any actual care; all they’re doing is managing his symptoms.”
She continued: “He’s comfortable and well looked after, but his condition in effect is only just getting worse.”
On Wednesday, 30 July, Katie said they had “the worst day in the last 18 months”. She shared: “It was a horrific day. Alex was really uncomfortable; he had hardly any sleep the day before, and he woke up saying he was done. We all gathered around him thinking, he looks so ill, this is it, we’ve run out of time.
“I think part of his feeling so low is that he’s fully aware that his cancer is potentially progressing while he’s been lying there. He was starting to lose hope.”
After Alex said he had had enough, Katie said he was offered to go home or to a hospice. “They essentially asked him where he would like to die,” she added.
Refusing to give up, the family have been researching alternative treatment routes outside of the NHS for the last three weeks and set up a GoFundMe page to help raise costs to cover Alex’s treatment moving forward, including travel and any additional costs.
After weeks of research and rejections, Katie connected with a Professor in Germany who, despite being unable to treat Alex personally, provided details of seven treatment options, all currently used in Germany’s leading Rhabdoid tumour institute – the University Medical Centre, Augsburg.
Professor Robin Jones of the Royal Marsden has since been in contact to say that he is willing to take on Alex’s case privately. They are now waiting for further details on his transfer and what the treatment plan will look like for Alex.
“Alex is absolutely over the moon, and he’s raring to go again. He’s always been so determined and said he’s going to be the one success case and hopefully a pioneer for children with this awful disease,” his mother-in-law said.
“We’ve gone from the darkest place to now, there’s some light at the end of the tunnel. We’re feeling hopeful again. We will never give up on Alex because he’s so determined to live.”
You can visit Alex’s GoFundMe page here.
