A BRAVE Eckington teenager has pledged to raise awareness of a children’s charity that has given her and her family much needed support during her one year stay in a London hospital.
Antonia Payne-Cheney, who has Elhers Danlos Syndrome (EDS) with gastrointestinal failure and Postural Orthostatic Tachycardia Syndrome (POTS), has been a resident at the London Royal Hospital (LRH), since
November 2013 after suddenly becoming unwell at the age of 15.
The condition is often misdiagnosed and as a result Antonia had six admissions to Gloucester and Bristol children’s hospital’s in the year prior to being admitted to LRH.
During her bed bound stay Caudwell Children, the national charity that provides practical and emotional support to disabled children and their families, has provided support to both Antonia and her mother Victoria.
Antonia has pledged to become an ambassador for the charity in order to help local school children understand EDS and POTS and provide training to the charity’s volunteers so that they can support others with the condition.
Antonia also wants to explain how Caudwell Children has supported her family and intends to raise money for the charity, having undertaken a professional online course in fund-raising.
“Before I became ill I used to be very active and physically fit, enjoying horse riding, competitive cheerleading and ballet.” she said.
“But now that I’m confined to hospital I’ve focused my time on crafts and playing games on my laptop.
“However, I’m extremely proud to have created a You Tube channel and accompanying blog during my time here.
“This new role will give me the opportunity to meet new people, train volunteers, develop my fund-raising skills and attract celebrity support.
“By utilising my new found skills Caudwell Children has given me a real focus for the future, and being an Ambassador will help me to repay them in some way for the help they have given us.” she added.
Mum Victoria said: “When your child is diagnosed so suddenly, with such a life changing condition, you simply don’t know who to turn to for help.
“Initially my main concern was the wellbeing and care of Antonia.
“However, as time has progressed I’ve had to consider other things outside her hospital environment.
“This is where Caudwell Children has been invaluable. Their Family Services Coordinator, Jaime, has come in
and helped me, and Antonia, to realise that there can be a life outside the confines of the hospital.
“She’s made me aware of the ACT Foundation, who provide grants for the modification of homes to accommodate the needs of disabled people, and guided me through their application process.
“Not only that she’s visited and talked to Antonia, at length, enabling me to take a break every now and then.
“As I’ve been living in accommodation on site this has afforded me much needed respite.” she added.
Antonia will also be instrumental in the formation of a Child Ambassadors Network for Caudwell Children in
the Greater London area and will begin her role with immediate effect.
Visit www.caudwellchildren.com for more information.
