AN inspirational hospice has featured on a BBC programme for the care it has given to a family with three children having the same genetic disease.

The Penn family's story was shown on Sunday on BBC One's Countryfile including their support from staff at Worcester charity Acorns Children's Hospice.

Three years ago, twin boys Toby and Corey Penn, aged 14, began to experience problems with their eyesight and in March 2015, Corey had his first seizure and tests revealed the boys were suffering from juvenile Batten Disease.

Children with Batten Disease experience devastating symptoms that worsen over time.

Mobility, speech and feeding skills fall away, leaving them severely disabled. With no cure, the children eventually lose their lives.

As the disease is a genetic disorder, the boys' siblings were also tested and nine-year-old Izzy was also diagnosed with the condition.

The family, from Hereford, featured on television as the programme launched the Countryfile Ramble for BBC Children in Need.

Jody Penn, the children's father 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 is also interviewed in the Countryfile film.

Her role is to provide whatever help the family needs.

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.

Through this scheme 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 were thrilled to feature on BBC’s Countryfile this year and it’s wonderful for us to be able to raise awareness of the vital care and support we provide to so many families across our region to such a large audience.

“It costs us £10 million every year to run services for families like the Penns and we simply would not be able to continue without the generosity and fundraising from the local community.

“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.”

To find out more about the Penn family and to donate, visit