Isaac Tilley, eight, could lose access to Brineura, which slows the progress of Batten disease.

The parents are worried as access to the drug to slow the progress of Batten disease is set to end.

Three-year-old Beau Kent was born with a rare condition meaning he stops breathing when he sleeps.

Geraldine hopes the new NHS network can further diagnosis and treat the rare genetic disease.

The roll-out of approved treatment for a childhood neurodegenerative disease is due to expire in May.

The condition means Vinnie was born with one eye and a small jaw, as well as one of his ears being on his cheek.

Charly Allso, from Solihull, has vasculitis and is walking with her cat to fundraise for charity.

Anna Roberts, 11, is one of just 39 people in the UK with the CLN3 strain of Batten Disease.