100 mile drumming marathon for Grace

Grace leads the way for Steve and Marina

A couple are embarking on a 100 mile drumming marathon to raise money for Martin House Children's Hospice and the Niemann Pick charity. Steve Janetta and his partner Marina Waymouth have been inspired to pick up their drumsticks by 9-year-old Grace Hitchens from Bingley suffers from the rare condition Niemann Pick Type C. Her older brother Harry died from the same illness in 2010 at the age of seven.

  • Only 50 children in the UK have Niemann Pick Type C

  • Sufferers lose skills including the ability to talk, walk and eat

  • Early onset of the condition means children rarely survive beyond teenage years

Last year, Grace was able to walk unaided, but now she needs adult support. She can also no longer say the names of her family.

You can follow their progress on Twitter @wishforgrace

Grace and her twin sister Emily, who does not have the condition