Carter's story

Posted by
Roald Dahl's Marvellous Children's Charity
Posted on
12:00pm, 12th May
Categories
Charity

Carter has a rare, complex illness. He is 11 years old, and his family couldn't cope without Roald Dahl Nurse Tina. "There are never going to be enough thank yous in the world for Tina" says Carter's Mum Laura.

Carter has a rare genetic disease which means that he dislocates his joints easily and it happens daily. He’s in constant pain and bruises at the lightest of contact. Carter is cared for by Tina his Roald Dahl Specialist Nurse. Tina provides both practical and emotional care for Carter and his family.

Laura and Chris (Carter's parents) wanted to share the story of how tough life is for Carter and the family, and how important it is to have the care and support of Tina. She makes a massive different to their lives and so we made a film with them at the end of 2020.

Behind the scenes:

This was a self filmed piece because of the coronoavirus pandemic. Laura and Tina both had to conduct their own filming. We spoke with Laura and Tina, about the process of shooting the film and how the whole family found the experience:

Laura said “During the start of the pandemic we were advised to shield with Carter as a family, so like a lot of people we went into full lockdown. Everything stopped, things you take for granted like trips to the supermarket, to the park, all of that had to stop. We were completely isolated from friends, family, loved ones and neighbours and it was quite an emotional time. A lot of people have suffered over the past 12 months, but we found it especially difficult, we felt very isolated and Carter was incredibly anxious.

Being able to film small parts of our daily life and talk to the camera was quite a cathartic experience for me as a mum, to share my emotion, just being able to get across some of my feelings. I think both Chris and I found it incredibly emotional because Tina does mean that much to us.”

Roald Dahl Rare Disease Specialist Nurse Tina explains how her role centres around providing families with a single point of contact. “Children with rare conditions are usually under multiple professionals, not just within the hospital but community services, therapy services, social workers, schools.

There is an enormous number of professionals involved so we provide them fundamentally with that single point of contact and we try to coordinate a lot of that care. We see ourselves as a bridge between hospital and those community services, improving that communication.”  

Tina said: “The filming re-emphasised that for me, you get caught up in your day to day and just do it, but filming it and just having more of an awareness and really being able to reflect on the support that I give Laura and Carter and the rest of the family was really enlightening and brought me back to why I want to do the job.”

Laura says: “Tina supports Carter, she supports Carter’s siblings, and she supports my husband and myself. There are never going to be enough thank you’s in the world for what Tina does for us and the impact she has had on our family.”

It was incredible of Laura, Chris and the family to allow us into their lives at that challenging time. We are so grateful for their support.

'Marvellous Thank You' Campaign

Our nurses and young people have truly been the inspiration for our ‘Marvellous Thank You’ collection. The simple but powerful act of sending one of the exclusively designed cards and donating will help provide more Roald Dahl Specialist Nurses just like Tina. 

Carter himself (and his teddy dog Pachino) have been the inspiration for a card, which forms part of the collection with designs by celebrities, Claudia Winkleman, Joanna Lumley OBE, Sir Quentin Blake, Gerald Scarfe CBE and Jane Asher. 

Send one of our exclusive charity thank you e-cards to someone who has supported you through this challenging year, and donate to help to provide more specialist nurses, just like Tina.

Send your card here 

Card created by Simone Carter