An inspirational Hereford family who have three children with the same rare genetic condition have featured on BBC One’s Countryfile.
The story of the Penn family and the support they receive from specialist staff at Acorns Children’s Hospice based in Worcester was shown on Sunday evening (September 10) as the programme launched the Countryfile Ramble for BBC Children in Need.
The Penns are also going to be taking part in one of the rambles themselves in October, alongside members of the public and Countryfile presenter Adam Henson.
Concerns were raised three years ago when twin boys Toby and Corey Penn, aged 14, began to experience problems with their eyesight.
Although it was initially put down to an eye condition, in May 2015 Corey had his first seizure and tests revealed the boys were suffering from juvenile Batten Disease.
It is a terminal disease which causes devastating symptoms that will worsen over time and for which there is no cure.
As the disease is a genetic disorder, the boys’ siblings were also tested. Mum Dee, 42 and husband Jody, 37, received the worst possible news when their nine-year-old Izzy was also diagnosed with the condition.
Jody said: “As parents we know we’re facing an uncertain future so we just try and make the most of every day as a family. Acorns is the children’s happy place. It’s somewhere we can make precious memories together and make their lives as fulfilling as possible. It also means we can have a break and spend some special time with our daughter Amber.”
Acorns supports the Penns with a family team worker called Penny who was also interviewed for the Countryfile film.
Penny’s role is to provide a broad range of support providing whatever help the family needs, whether it’s advice and advocacy or just a listening ear.
The Penns’ daughter Amber is supported through the Acorns Sibling Service and attends a sibling support group at Acorns run by trained professionals.
Thanks to a grant of £103,020 from BBC Children in Need, Acorns runs a three-year programme called Letting Go and Moving Forward which will allow the Penns and other families like them are able to access information and advice on the choices available to them in health, education, employment and housing.
Toby Porter, Acorns chief executive, said: “We are full of admiration for the Penn family and my thanks to Dee and Jody for bravely telling their story and the difference we have made in their lives in such an unimaginably difficult situation.
“Our gratitude also goes to BBC Children in Need and their continued support for Acorns, providing the funding necessary for the Letting Go and Moving Forward programme.”
Story from Hereford Times.