Real Life: How Cambridge Children’s Hospital will change lives

As well as providing integrated mental and physical healthcare, the new Cambridge Children’s Hospital will be a centre for cutting-edge research. As media partner for Presents Galore, the Newmarket festive fair which raises funds for the hospital, Velvet meets a mother and son who know firsthand how game-changing this research can be

Thirteen-year-old Tristan has a rare disease, but he doesn’t let that hold him back. Instead, he lives and breathes cricket, loves history, and hangs out with his mates. However, as a newborn baby, his early weeks were not so clear cut. His parents and healthcare professionals knew that something wasn’t right, but they just weren’t sure what.

“I remember a nurse practitioner saying that there were too many things wrong and we would need to see a geneticist,” says Tristan’s mum, Celia. “We suddenly realised that something was amiss. Our child wasn’t going to be what we thought our child was going to be.”

From the start, research was an important part of their journey and Celia spent her evenings trying to find answers. When Tristan was finally diagnosed at nine months, Celia found every research paper ever written about his condition. That learning helped them navigate their new world and ensure Tristan had the right support.

“With or without a diagnosis, research can really help you with certain aspects,” says Celia, who gives examples of feeding problems, obesity, diabetes, and blood pressure, all of which have been heavily researched. “This can give you ideas, even solutions.”

Because of her experience, Celia is a passionate advocate for the Cambridge Children’s Research Institute. This 5,000 m2 hub, in the heart of the new children's hospital, will bring researchers and clinicians together in one place to create a collaborative and multidisciplinary environment dedicated to improving the health of children and young people.

“For those waiting for a diagnosis, knowing there is a strong focus on research will provide hope that one day someone will find an answer to explain why and how,” adds Celia.

Russell Silver Syndrome (RSS) is a rare genetic developmental disorder. “It’s got a bit of dwarfism in it, so I have to take growth hormone injections every night,” explains Tristan. “My jaw was formed quite far back so I have to wear braces. For me, my rare disease is not that big a deal but I know some people have it a lot worse."

Having a diagnosis for Tristan was a relief, but also created mixed emotions for Celia and her husband, Matt. “You’re thinking, is my child going to grow up? Is it going to be degenerative? What treatments will be needed? Is there a treatment plan? With Tristan’s rare disease, like most of them, there isn’t a treatment plan. There’s no cure.”

Discovering Cambridge Rare Disease Network on the internet gave them a chance to meet with other ‘rare’ families who were facing similar challenges, whether they already had a diagnosis or were still waiting. The Unique Feet group provided a lifeline for rare children, their siblings and their parents.

Tristan enjoys spending time with his friends who don’t have a rare disease but finds huge value in shared experience. “It’s also important to hang out with people who do have a rare disease because they can understand what you’re feeling because they’ve been there,” he explains.

It’s estimated that one in 17 people will develop a rare condition at some point in their life. Says Cambridge Rare Disease Network: “Each rare disease affects few people, but with 8,000 different conditions affecting 400 million people worldwide, they are individually rare, but collectively common.”

Celia explains there is a continuous struggle to gather interest and secure funding for robust patient-led research. She believes bringing world-leading research directly into the Cambridge Children's Hospital building will make a difference.

“This is going to remove barriers. It’s going to create an easy pathway for people to be involved in research. The easier we can make research happen the more hope we have to advance the healthcare within the children’s hospital and increase the offer for all children entering the doors.”

About the Hospital
Cambridge Children’s Hospital will be the first hospital designed to truly provide mental and physical healthcare together, delivered by staff who are trained in both. Housing University of Cambridge research institutes focused on the prevention and early diagnosis of disease, the hospital will deliver game-changing advances in life sciences research.
The Campaign for Cambridge Children’s Hospital, a partnership between Addenbrooke’s Charitable Trust (ACT), Head to Toe Charity and the University of Cambridge (CUDAR), is committed to raising £100 million from philanthropy and fundraising.
See cambridgechildrens.org.uk

Show Your Support
Gathering hundreds of Christmas food, drink and gift stalls under a single roof, Presents Galore raises tens of thousands for good local causes - including Cambridge Children’s Hospital. Taking place at Newmarket’s Rowley Mile racecourse from November 29 to December 1, tickets are available now at presentsgalore.org