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The heartbroken parents of a special little boy who ‘touched so many people’s lives’ have pledged to raise over £100,000 in his memory for the new Cambridge Children’s Hospital 

The mum and stepdad of a special little boy who ‘touched so many people’s lives’ have pledged to raise over £100,000 in his memory after he died from a rare incurable disease, aged 11, in September last year. 

Elliott-James Heslop, or Elliott as he was known to family and friends, was diagnosed with a rare, incurable disease called TTC7A deficiency when he was just three months old; a condition that causes diarrhoea, inflammation of the intestines, bowel obstructions, immune dysfunction, and an inability to absorb nutrients.   

He had his first surgery at just a few hours old and underwent multiple surgeries to try and fix strictures in his bowel. Unfortunately, these were unsuccessful, and Elliott had to have an Ileostomy. Unable to absorb nutrients in the usual way, Elliott was TPN-dependent from birth, meaning artificial nutrients were given to him via a central line called a Hickman Line.  

Elliott spent the first eleven months of his life in hospital and at just eight months old underwent a bone marrow transplant at Great Ormond Street Hospital. 

His condition meant that when he was at his worst, he couldn’t walk very far as it affected his bone density and muscle mass. It also prevented him from joining a football team or going on school residentials. It also restricted what Elliott was able to do in a day as he would need to be home at certain times for his TPN treatment, which also meant the family were not able to go abroad. However, mum Kayleigh Eley and husband, Ross, Elliott’s stepdad, from Cambourne in Cambridgeshire, said Elliott loved trips to caravan parks – and said he went swimming for the first time last year after finding out about a special wetsuit he could wear in the water. 

Despite the impact of his condition, Kayleigh and Ross said Elliott never moaned. 

“He would have his moments like with football, where he would say I wish I could play football, but it would only be the odd comment now and then. He never moaned, he just got on with it,” Kayleigh said. 

Although they always knew Elliott’s condition was incurable, Kayleigh said it was still a shock when he died.

“Even though you know it’s not curable you just kind of live every day and go with it. But we didn’t expect him to go downhill as quickly as he did.” 

It was in December 2023, that Elliott caught the flu, which impacted his liver and meant he needed to be assessed for transplant again. Kayleigh and Ross were told Elliott would be listed for a multi-visceral transplant, but ten days later after Elliott’s condition worsened, he was rushed back into hospital with painful pancreatitis and in July last year, the family were given the devastating news that Elliott’s condition could no longer be treated. Sadly, Elliott passed away in September.   

Kayleigh and Ross, who have three-year-old daughter, Maddison, together, and Scarlett, 15, and Florence, 7, both from previous relationships, set about fundraising to create some special memories with Elliott before his death as well as raise money for the Cambridge Children’s Hospital (CCH), through Addenbrooke’s Charitable Trust (ACT).  

The Cambridge Children’s Hospital is set to be built by 2030 and will be the first specialist children’s hospital for the East of England; the only region in the UK without one. Bringing together clinical excellence from two NHS Trusts with pioneering research from the University of Cambridge, the new five-storey 35,000sqm hospital will be based at the heart of the Cambridge Biomedical Campus, Europe’s largest biomedical campus.   

After writing to Elliott’s favourite football team, West Ham, every day for three months, Ross finally got lucky and both he, Elliott and Scarlett were invited down to West Ham for a training session with the players, where Elliott got to meet one of his favourites, James Ward-Prowse, and walk onto the field as a team mascot.  

Ross – who came into Elliott’s life at six years old – describes himself as a ‘bonus dad’ rather than stepdad and said: “I feel really privileged to have had Elliott in my life. He’s like the son I never had.” 

Kayleigh describes her son as “cheeky, funny, very caring and very sensitive” adding, “So many people have said to me how he really touched their lives. I know he’s amazing because he’s my child and I know how great he is, but he did, he really touched other people’s lives.” 

As for how they are, Ross says: “I don’t think I have accepted it yet because I don’t want to. The worst thing about it is, is that life just keeps on going on around you. It’s the worst pain ever. I’d rather someone chopped off my legs than this. Elliott was my bonus child and the way I feel is the worst feeling ever.” 

Mum Kayleigh said: “People think you are ok but we have to be because we have our other kids. But I still expect to see him sometimes. Sometimes you look and think he is going to be there.” 

Ross said he came off Facebook for six months after Elliott’s death because he found all the memories too painful and says: “Every day is different. Every hour is different.” 

The couple say they remember Elliott as the cheeky little boy who would play pranks on his family, including the time he hid inside Scarlett’s wardrobe and started playing with the LED lights on her ceiling before jumping out to scare her. 

Kayleigh also speaks movingly about Elliott’s best friend who keeps a picture of Elliott in his bedroom and a candle to remember him by and when he has had a bad day, will still call Elliott’s phone to leave a message.  

Ross and Kayleigh say the number eleven has come up a lot in their lives – both before, and since, Elliott’s death aged eleven. When Ross completed a charity walk from his home in Cambourne to the West Ham grounds they arrived at 11am. West Ham also honoured Elliott’s memory by clapping him during a game at the eleventh minute and after moving house recently, they moved to number eleven, with Ross saying – “Elliott will never leave us. Not in a million years.” 

The couple have pledged to raise ÂŁ100,000 for the new Cambridge Children’s Hospital, through Addenbrooke’s Charitable Trust (ACT) as a way of thanking Addenbrooke’s for the amazing care Elliott received since birth – describing his consultant, Dr Camilla Salvestrini, as “amazing”.  

Although their target is ÂŁ100,000, Kayleigh and Ross are hoping to boost their target to ÂŁ125,000 so that they can fully equip one of the rooms within the Cambridge Children’s Hospital and have it named after Elliott. 

“We’d love to have something named after Elliott in his memory,” said Kayleigh, “and know that we helped fund something that would be for the whole community. It’s raising money for the next generation of children and supporting all the families that will be going there.” 

Fundraising efforts so far have included the walk from their home in Cambourne to the West Ham football grounds; a children’s sponsored swim; a 30th tea party in July to celebrate ACT’s 30th and a 72-hole golf challenge at Cambridge Country Club earlier this month, with a 9-hole lesson donated by PGA Professional Joel Rickard.  

Ross’ next challenge will be this September, when he and his boss will complete the walk along Hadrian’s Wall over three days, setting out on the 11th

Click here to donate to Elliott’s page.

Fundraiser turns to music to raise awareness of rare disease  

A hospital patient with a rare inflammatory disease of the nervous system has turned to music to raise funds for Addenbrooke’s Hospital.

Ben Standing, 50, from Ipswich, was diagnosed with CLIPPERS Disease at the end of 2024 after months of investigative scans and a brain biopsy. 

There is currently no diagnostic test or cure for the disease which is so rare there are only 140 recorded cases across the globe. CLIPPERS, which is treated with steroids, affects a person’s balance and co-ordination and can affect the ability to speak and swallow.  

Both CLIPPERS and brain lymphomas react to the same treatment and one can often be mistaken for the other.  As a result, Ben was just one day away from starting chemotherapy for what was believed to be a brain lymphoma when a team of specialists at Addenbrooke’s halted treatment, calling for further investigation. 

This led to another scan that showed a very different picture to one several months earlier, with changes in the pons area of the brain more in line with CLIPPERS.  

Ben said having his chemo treatment called off the day before it was due to start was a huge shock – but something he is incredibly grateful for. 

“I was due to have the lines fitted in my arms on the Friday. On the Thursday night, the day before my treatment was due to start, the team at Addenbrookes flagged the fact they could see infection but described the biopsy results as inconclusive so pulled the treatment and called for more tests. I was fed up at the time but in hindsight it stopped me having unnecessary chemotherapy.” 

Ben is now under the care of a team of specialists at the Neuro Immunology Clinic at Addenbrooke’s, including Dr Ed Needham (pictured with Ben below), a consultant neurologist who is one of only 10 or 11 CLIPPERS specialists in the UK.   

“One of the tricky things with CLIPPERS is that it happens in a part of your brain that is really, really important, and so doing a brain biopsy, which is the gold standard test that we would often go to for difficult diagnoses, would lead to significant disability. As a result, we are reticent to do that so we very much rely on scans,” he explained, adding: “Sometimes the findings are very typical and you can diagnose it easily from the scan, but other times it can be far trickier.”  

“Ben’s case was a very unusual presentation of an already very unusual, rare condition. Although you wouldn’t have looked at his first scan and thought it was CLIPPERS, his scans changed over time, raising this as a possible diagnosis, and fortunately he was able to have a biopsy early on as the area affected was not in the area of the brain usually affected by CLIPPERS.” 

Dr Needham said the disease, which has no cure but is treatable through medication, is tricky to diagnose. “CLIPPERS is really difficult in its similarity to lymphoma. The scans can look identical, as can the response to steroids. We also think that there are some patients that have CLIPPERS who go on to develop lymphoma, but of course the counter argument to that is that perhaps the CLIPPERS was a misdiagnosis and it was actually lymphoma from the start.” 

“Fortunately, if a patient with CLIPPERS was mistakenly given chemotherapy it would not be a catastrophe, as lymphoma treatment would likely be a highly effective treatment for CLIPPERS, but potentially a bit too strong. It would help your symptoms and your disability, but it could put you at higher risk of complications like infections.” 

He said the process used to eliminate different scenarios in Ben’s case was a ‘perfect team effort’ adding:

“There were a lot of people involved in getting to the bottom of Ben’s case, and the communication between these professionals was very good. Genuinely with things like this, a system should not rely on a single person to diagnose an unusual condition, but it is the importance of the team approach that shows it is working.”

Ben first noticed something wrong whilst on holiday in May 2023 when he started veering across pavements when walking. 

“I was bumping into whoever I was walking next to. Within two weeks, I would be falling off the kerb into the side of the road. I would redirect myself back onto the pavement and it would happen again. It would be like I had had ten pints of beer but I have never had ten pints of beer in one go in my life, ever!”

Ben in healthier times

On his return to the UK, Ben was referred to hospital for a brain scan which consultants believed to be a brain lymphoma with sinister results, a type of brain cancer. Ben was told if they didn’t treat it, it would be “life-threatening.” 

He was then referred to Addenbrooke’s where he underwent a brain biopsy and whilst waiting for the results was put on a course of steroids. “Within half an hour, I was walking 99% normally again,” he said. However, after the dosage was reduced, his symptoms worsened.  

As well as his walking, his speech has slowed and Ben starts to stutter at the end of the day when his medication starts to wear off. 

Ben, who has not been able to work since his diagnosis, said the care he was given by Addenbrooke’s has made him want to give back to the Neuro team. He began writing computer-generated songs about his CLIPPERS and hopes to raise ÂŁ10,000 with his song, Powered by Love, in the hope it will help fund a future diagnostic test or cure for the disease.  

Describing his style as ‘upbeat and cheesy’ Ben has already attracted a large following on his YouTube page, with 1.5 million views and 54,000 subscribers.

“Addenbrooke’s have been amazing from day one, ringing me twice a day after I had been in hospital to check if I was ok. I dread to think how much money has been spent on my care and operations, so if I can do this and possibly help find a cure for CLIPPERS or an early diagnosis, it would be amazing.” 

Addenbrooke’s Charitable Trust (ACT) is the official charity for Addenbrooke’s Hospital and the Rosie and funds cutting-edge equipment, groundbreaking research, and improvements to the environment for both staff and patients, above and beyond what the NHS is able to provide. 

Dr Needham said he would not have his career, as one of the few CLIPPERS specialists in the UK, had he not received funding from Addenbrooke’s Charitable Trust, who provided the funding for a clinical research fellowship before going on to gain his PhD.  

He called for more funding for early research saying:

“I wouldn’t have been able to get my PhD and have my research career if I hadn’t had the ACT funding.  It is about investing in the person to be able to then go on and do research in the long term.” 

Ben’s website, which includes a link to his Just Giving Page, can be found at: www.benstanding.com. His page also includes a link to Powered By Love, the song he is using to launch his £10K fundraising appeal for Addenbrooke’s Neurology department.