Drew Axford-Ewing is 9 months old and has Cystinosis. He was diagnosed with Cystinosis on Christmas Eve and his story, and that of his family, was recently featured in the Devonshire press.
The full story can be read at ThisIsSouthDevon.com.
The family, however, are taking positive action following his diagnosis by organising a "pig racing" and auction night at a local pub, and have further plans for a gala concert, featuring musical group Top Hat, later in the year. Half the proceeds from these events are going to the Cystinosis Foundation UK, with the other half going to the Ronald MacDonald house in Bristol that provides "home away from home" for families with sick children.
Meanwhile, local runner, Simon Bundy, is planning to undertake a sponsored 32 mile run across the famous hills of Dartmoor. You can sponsor him via his Just Giving Page.