hadrian's wall Archives - Addenbrooke's Charitable Trust

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 £100,000 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 £100,000, Kayleigh and Ross are hoping to boost their target to £125,000 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 30^th tea party in July to celebrate ACT’s 30^th and a72-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 11^th.

Click here to donate to Elliott’s page.

A 77-year-old retiree, who has been living with Parkinson’s Disease for five years, has set himself the challenge of walking a 120-kilometre section of Hadrian’s Wall to raise funds for The Centre for Brain Repair at Addenbrooke’s Hospital and to raise awareness of the importance of exercise for people living with Parkinson’s – at the point of diagnosis.

Trevor Elliott, from Norfolk, was diagnosed with Parkinson’s in September 2019 and it came at a point where he was already very low, having lost his wife, Maryse, five months earlier from Leukaemia. “Losing my wife after 48 years together was like losing my legs. It was a very dark time for me.”

It took approximately two years for Trevor to get diagnosed because he initially put his tremor down to nerve damage on his spine. “I developed a tremor in my right hand, and it got so bad I was dropping things all the time. I couldn’t even carry a cup. My wife and I would try and make a joke of it. We’d say I had a good hand for shaking sugar over strawberries.”

After receiving his diagnosis, Trevor decided to take back control and turned to the internet for answers. “I found some videos from a US symposium and one of them was about exercise and how it allows you to take back control – and that to me is the key message here.”

Parkinson’s Disease is a life-changing neurological condition that affects both loss of mobility and cognitive dysfunction. It affects 153,000 people in the UK today and over 7 million worldwide. One in 37 people alive today in the UK will be diagnosed with the condition in their lifetime and currently there is no cure. Alongside pharmacological treatments, exercise is fundamental in the management of Parkinson’s disease. Evidence over the last 10 years has shown that being active can improve not only mobility, reduce falls risks and alleviates symptoms such as pain and stiffness but also reduce anxiety and depression. Regular physical activity improves mood and overall physical health, boosting confidence and independence in daily activities.

Trevor was one of six Parkinson’s patients to work directly with a specialist Physiotherapist and PhD Fellow at the University of Cambridge to co-design a digital intervention, Knowledge Exercise Efficacy and Participation (KEEP), which aimed to promote the importance of exercise for people with Parkinson’s at the point of diagnosis.

The KEEP study was part of a 3-year PhD Fellowship funded by the National Institute for Health and Care Research, Applied Research Collaborations East of England and was supported by an ACT grant. The intervention was led by PhD fellow, Ledia Alushi Agley, whose studies address the issues of early promotion of exercise together with early involvement of allied healthcare professionals – such as physiotherapists and speech and language therapists – in the care of patients with Parkinson’s.

The KEEP intervention consisted of six online modules and four online group discussions facilitated by a specialist physiotherapist. Modules looked at the importance of physical activity, how to exercise effectively with Parkinson’s as well as taking control following diagnosis. An integral component of the intervention was the inclusion of personal stories and messages from people living with Parkinson’s, including Trevor. These personal accounts offered valuable insights and motivation, demonstrating real-life examples of how to manage and thrive despite the condition. 

To raise awareness of the importance of exercise, Trevor set himself the challenge of walking a 120-kilometre stretch of Hadrian’s Wall, from Newcastle to Carlisle, after contracting sepsis last year. “The sepsis kicked off all my Parkinson’s symptoms and made them deteriorate. I needed some counselling at the time too, as anxiety and depression are part of the disease. It made me feel vulnerable for the first time. In the end, I decided the best way for me to get out of this spiral of depression was to think about other people and take on this challenge.”

Trevor hopes to raise £1,200 for The Centre for Brain Repair through Addenbrooke’s Charitable Trust, the official charity for Addenbrooke’s and the Rosie, whose supporters raise funds to help make the hospitals even better by funding cutting-edge research, innovations and high-tech equipment, above and beyond what the NHS is able to provide.

Accompanying him on the walk later this month will be his eleven-year-old dog, Sam, an English Pointer, “who is the same age as me in dog years, we’re both 77.”

“It’s not hard to walk 12 miles a day. It’s all about getting up the next day to do it all again but for someone with Parkinson’s it’s also the constant fight with fatigue and apathy.”

Diagnosed with ‘right-side’ Parkinson’s, Trevor’s balance and co-ordination is affected, with tremors in his right foot and hand, along with low mood and fatigue associated with the disease.

“One of the problems of Parkinson’s is fighting fatigue and apathy. If I keep going during the day I am fine but if I sit down I could fall asleep. It’s the battle of keeping active and doing stuff but I still go to the gym twice a week and walk 10km each day.

Ledia said that non-pharmacological interventions like KEEP, which promote the role of exercise around the time of diagnosis, are crucial as they can help patients manage their symptoms and continue to live well with Parkinson’s.

“Introducing these interventions in the NHS Parkinson’s pathway at Cambridge University Hospitals and Cambridgeshire and Peterborough Foundation Trust as part of a randomised control trial showcased the positive impact the intervention had in improving participants’ understanding of the role of exercise and their confidence in trying different exercises as soon as they were diagnosed, rather than waiting until mobility has deteriorated.”

Trevor believes that participating in research studies like the KEEP intervention plays a vital role in highlighting the significance of physical activity in managing Parkinson’s disease.

“When first diagnosed, I was told I had a window of between 6 and 14 years before I would be incapable of looking after myself which was a complete turnaround for someone who, although 72 years old at the time, was still active and walking 10 kilometres a day and had camping and hill walking down as my main hobbies. I was devastated. Nobody told me at the point of diagnosis about the importance of exercise. I just walked out of the hospital with this window of time I had left in my head.”

Trevor hopes that by doing his walk it will give hope to others diagnosed with the Parkinson’s. “When Jeremy Paxman presented a Parkinson’s Petition to Downing Street delivering a list of recommendations, the headlines were ‘Having Parkinson’s makes you wish you hadn’t been born.’ I am really annoyed with Paxman for that. I think it’s absolutely awful. You can either be like Paxman or take some control. I have been given this window of between 6 and 14 years before my symptoms make it impossible to look after myself. I have good and bad days but I would like to push that window as far as I can.”

To sponsor Trevor and donate to Parkinson’s Disease Research through ACT, click here

Click here to to make a difference and fundraise for ACT. Alternatively, email: fundraising@act4addenbrookes.org.uk

Tag: hadrian’s wall

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

77-year-old with Parkinson’s all set to walk 120km stretch of Hadrian’s Wall to raise awareness around importance of exercise