Specialists have taken more than a year to recognise Amy Louise Collins from Crowthorne in Berkshire as suffering from Emery Dreifuss.

The weakness of Amy's muscles means she must be strapped in to a chair to prevent her from hurting herself.

Her family have now begun raising money to pay for a specially adapted wheel chair to allow her greater freedom of movement.

Family's anguish

Fundraising events are taking place in and around Crowthorne - including a round Britain motorbike ride by Amy's aunt.

The family hope to raise £7,000 for the specialist chair.

Mandy Collins, Amy's mum said: "We have a good group of friends that are supporting us, but it is hard.

"I'm finding it easier to cope with Amy's problems through the fundraising.

"It helps us to focus on something more positive rather than sitting around crying over something that's really..well.. ruined everybody's lives."

Muscular dystrophy causes muscles to deteriorate, weakening them and making movement difficult.