Kurtis Ward was first diagnosed with familial adenomatous polyposis (FAP) around 10 years of age. Kurtis took this news very well. He was supported with a genetic counsellor in the process.

After the diagnosis he was under the St Mark’s Polyposis Registry in St Marks Hospital, Harrow, London. The Polyposis Registry was the first in the world, and today is one of 3 world leading sites of Polyposis expertise in the world. Their invaluable research into the condition is not NHS funded.

Within months of Kurt’s diagnosis, St Marks discussed if Kurtis would like to take part in a national drugs trial to reduce the growth of pre-cancer polyps. It was a 3-year commitment. Kurtis attended the meetings and discussions about this and intently absorbed all the information. He made the decision to do this.

At that point Kurtis would attend the hospital 6 monthly with overnight stays on the paediatric ward. He was given a children’s polyposis nurse. The first one, Jo, was an ex-military nurse who had served in front line conflicts. Kurt enjoyed talking to her about her experiences and knowledge. His second nurse was Jackie, who the team also nicknamed ‘Velcro’. When her young people turned 18, she would still track them down at their appointments and ‘wouldn’t let go’ of her contact with these young adults.

Kurt’s first consultant was very similar to David Tennant, and this consultant conducted the first colonoscopy in the UK under the direct training of the person who designed modern day scopes. As an adult Kurt was transferred to the care of Dr Lachford who had his childhood here in Norwich at Hellesdon. Dr Lachford plays an amazing music collection during his procedures.

Leading up to 17 when Kurt had his bowel removal, his consult Professor Sue Clarke, who was a straight talker with a dry humour arranged for a surgeon to do his surgery. The surgeon is also a surgeon to the Royal family, and Kurtis enjoyed the prestige of that!

Visiting the hospital, we made a point of turning these into mini respite breaks from the care of his sibling, Fynley. We would enjoy the delights of London, to the point where we were running out of museums. The last museum was Freud’s House and the Jewish Museum.

Kurtis took part in Polyposis Information Days where he supported other young people who had diagnosis and were preparing for surgery.

He also took part in Polypeople meetings and raised points of focus or interest for the group. The Information Days are National events for medical professionals and those affected by FAP. Packed with seminars and workshops on research, discussion groups, understanding and updates of medical practice and procedure and the like.

To Kurtis this registry was like a second family. He trusted in their knowledge and loved the banter, bustle and learning of that environment.

As a result, a few months ago Kurtis was offered two HCA (Health Care Assistant) apprenticeships on wards at the Norwich Hospital. His application and interview (which I could hear from another room, due to skype!!) were perfect. The feedback from both departments was that there was no feedback necessary. He had covered everything.

The 2 departments fought and bribed Kurtis and finally he decided to go with the AMU (Acute Medical Unit). This would give him an opportunity to have more medical training and fast track him into nursing itself. Sadly, Kurtis died the weekend before he was due to have his uniform and mask fittings. I contacted the department, and they were so upset and praised Kurt’s approach to his HCA role. I feel that this was due to all that he had learned and absorbed as a patient and patient support at St Marks Polyposis Registry.

It makes sense that people that knew and loved Kurtis can have the opportunity, instead of buying flowers that are short lived, to instead donate to his community at St Marks to help push through their knowledge and treatment of FAP on the world stage. Please share this as you wish amongst your own families and communities.