EVERY day this angelic little boy fights against a rare muscle condition to stay alive.

Will Collins, now 17 months old, is so weak he struggles to breathe and swallow. Holding his head up is a challenge and a simple cold could prove fatal.

Born prematurely with twin Isla at just 2.2 pounds, Will, who has x-linked Myotubular Myopathy, was nine months old before he was fit enough to leave hospital and is fed through a pipe into his stomach.

Mum Claudia, who cares for Will full-time at their Boscombe home, is noting down all he’s been through, from biopsies to hernia repairs, for him to read when he’s older.

“Will struggled from the word go with his breathing,” she said. “As the days and hours progressed it became clear something was seriously wrong.

“He was really scrawny and it took a long time for him to put on any weight.

“For someone so small he’s been through such a lot. There was just so much happening, I decided to write him a little diary of things so it’s all down on paper for him to see.”

Just one per cent of the one in 50,000 babies born with the problem reach the age of 10 and doctors don’t deal with many cases.

A garden party for Will, raising money for the trust, is being held today, Sunday August 29, at 8 Overcombe Court, 22 St John’s Road, Boscombe, BH5 1EW. It runs from noon to 4.30pm, with a barbecue, cake stalls and an auction at 2pm.

Claudia said: “It’s been a bit of a learning curve for everyone. Life was going to change anyway – we just didn’t know quite how much.”

Claudia and husband Duncan say the Myotubular Trust helped them through their darkest days when medics were advising them to switch off Will’s life support machine.

“They’ve just been a lifeline really,” she said. “When the doctors were saying maybe we should let Will go, they said we should give him a chance – he could improve in time.”

Through the Trust they’ve met sufferers in their teens, which has given them hope.