Young Carter joins celebrities in national campaign to thank superhero nurses.
An 11-year-old boy from Birmingham has joined celebrities and artists in becoming the face of a national campaign to thank those who have helped him and thousands of seriously ill children like him through the pandemic.
Carter has a collagen connective tissue disorder, which sees him dislocate his joints several times a day and he bruises like a peach at the lightest of contact. His condition affects every part of his body and leaves him in pain and with severe headaches and bruising. He has also been diagnosed with autism.
He and his family are sharing their story on Roald Dahl’s Marvellous Children’s Charityas part of a campaign by Roald Dahl’s Marvellous Children’s Charity to acknowledge the countless people that have played an important role in helping others through the pandemic.
Videos of Carter and his family, together with national railway advertising billboards including at Birmingham New Street Station where Carter’s parents work, help frame the charity’s campaign. The campaign invites members of the public to send one of a number of celebrity cards designed especially to thank those who have offered unwavering support throughout the last few months.
Carter himself has designed a card, which forms part of the collection with designs by celebrities like charity patrons Claudia Winkleman and Joanna Lumley, charity co-president Sir Quentin Blake, Gerald Scarfe and Jane Asher.
Carter is under the care of Roald Dahl Specialist Nurse Tina Boswell, who is based alongside three other Roald Dahl Specialist Nurse colleagues at the UK’s first rare diseases centre for children at Birmingham Women and Children’s NHS Foundation Trust.
Carter said: “Tina is just like a legend; she does everything, not just for me, but to all her other patients. She’s always there if anyone needs anything.”
As Carter’s specialist nurse, Tina brings together consultants, hospital colleagues, community teams and social care. This integrated way of working highlights the multiple people, care agencies that are involved in looking after Carter and the thousands of children who also need long-term care.
Tina said: “Children with a rare disease or an undiagnosed condition are usually under multiple professionals, not just within the hospital, but within the community too. Therapy services are often involved – physiotherapists, occupational and speech and language therapists – there could be social workers and schools involved. And so there are an enormous amount of professionals to liaise with. Living with a rare condition can also be very emotionally draining.”
Carter’s mum Laura said the whole family was pleased to be asked to be involved in the campaign, and was thankful for the support Tina had offered during the pandemic. The fact that the digital billboard is taking pride of place in Birmingham New Street railway station where mum Laura and dad Chris work just adds to the excitement.
At the start of the pandemic, we were advised by the NHS to shield with Carter as a family,” she said. “So like a lot of people, we went into full lockdown – but everything stopped. You know, things that you take for granted, long trips to the supermarket or going to the park, all of that had to stop. We were completely isolated from friends, family, loved ones, neighbours, and it was quite an emotional time.
“A lot of people have suffered in the past twelve months, but we found it especially difficult. We felt very isolated. A lot of our appointments became virtual appointments, speaking through a computer or over the telephone. Carter only went into hospital when treatment or tests were absolutely necessary. And at that time, only one parent could be with Carter. So it was either myself or my husband.
“Without Tina, I honestly don’t think I would have coped. And what really brought it home to me was the connection that Carter has with Tina.”
The connection between Tina and Carter is so strong that he refers to her as his best friend, and when Carter was concerned about going into hospital, Tina helped him by getting a special mask for the dog toy which accompanies him everywhere, and which is now featured on the Carter-inspired charity card.
“Our nurses and young people have truly been the inspiration for our ‘Marvellous Thank You’ collection,” said Louise Griew, Chief Executive of Roald Dahl’s Marvellous Children’s Charity.
“Children and young people with lifelong conditions have had the additional complexities of COVID-19 on top of their complex health conditions, and everyone in healthcare and the wider support bubbles have been working hard to keep them safe.
“We wanted to give the public a way to say thank you to the people who have been invaluable this year, whilst also raising donations to help provide more Roald Dahl Specialist Nurses within the NHS and continue our vital support work.”
Louise added: “Roald Dahl’s Marvellous Children’s Charity supports children and young people affected by complex, lifelong illnesses like rare diseases, sickle cell anaemia, neuromuscular conditions and epilepsy. It does this by working with the NHS to establish funded posts for Roald Dahl Specialist Nurses. The charity also supports children and young people as they move from children to adult health and social care services, which can be a traumatic process for all the family.”
The public can send a thank you card and make a donation by visiting roalddahl.com/thankyou .
