THE parents of a toddler who needs 24-hour care after being born with an extremely rare illness have set up a charity in his name.

Coby Hilton needs 17 different medicines a day, as well as physiotherapy and occupational therapy to help with the symptoms of Neonatal Cushings McCune Albright Syndrome.

The condition means his body produces too much cortisone, a steroid, which has led to his bones thinning out and his collar bone and spine being fractured.

Nineteen-month-old Coby has had to have his adrenal glands removed, his body produces no salt and he has to be fed by a tube through his nose.

His mum Michelle, 28, of Kenmore Grove, Cadishead, said: "He stopped growing in length but he was cushioning up like a pillow, he weighed 7lbs but he looked like he weighed 15lbs.

"His adrenal glands were removed because they were over producing so I have to give him adrenaline three times a day for the rest of his life.

"If he's unwell we have to double or treble the dose but if we don't realise he's ill and he falls unconscious then he could die within half-an-hour.

"It affects the bones as well. If he breaks something it might not heal and he might end up needing a wheelchair."

Coby was taken to hospital four weeks after he was born when his parents thought he had an infection.

However he remained in hospital for more than four months and was kept on oxygen while doctors tried to diagnose his condition.

It is so rare that Michelle says only six other babies in the world have been born with it.

Michelle said: "In the beginning it was really hard because we didn’t know what was going to happen to him and we were thinking of the worst scenarios.

"The worst thing for us would have been if he hadn’t had the mental capacity to know about life.

"When they told us what he had we were upset and surprised but we knew it didn’t shorten his life expectancy and mentally he is really good."

Michelle and husband Lee, 32, have now set up Coby’s Appeal to raise funds for his future.

The charity kitty was kick-started last weekend after Lee and friends of the couple took part in the Great Manchester Run raising £1,600.

Michelle, who is also mum to Kai, seven, Sonnie, five, and Summer, three, added: "We just want to say thanks to everyone who ran and sponsored Coby’s Appeal.

"We were in the hospital with him for six months and the other children coped really well.

"We don’t know what the future holds for him and because of that we’ve started a charity appeal for him so we can set up a fund and maybe take him to America to meet the other families of children with this condition.

"Or we could use it to buy a wheelchair if he needed one because of his bones.

"We need to prepare for whatever might happen."

Anyone who wants to help with the charity can email: kaisonsum@yahoo.co.uk