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Rugby club to brave the loony dook for Fife tot with rare condition

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Kirkcaldy Rugby Club will be braving the freezing waters of the Forth this New Year to help a little boy with an incredibly rare form of dwarfism.

The club is taking on the loony dook to raise funds for three year old Cooper Provan, who is one of just 100 children worldwide to be born with the terminal condition rhizomelic chondrodysplasia punctata (RCDP).

Cooper is severely disabled and unable to communicate, and needs specially adapted equipment.

A crowdfunder has been set up on the JustGiving website in support of the family’s needs and has already raised more than half of the £2,800 target.

Cooper’s dad Mikey, 32, said: “The condition is very rare. There are 100 cases known worldwide. I think there’s one in England and the rest are in America, as well as one in Iran.

“We’ve had most of our help from a Facebook group for all the families who are affected. That’s really helpful because there are people whose kids are a lot older and they’ve been through everything.”

Cooper with his sister Lily Rose, 6.

When Cooper was six months old, parents Mikey and Sammy, 29, were told it was unlikely he would see his second birthday.

However, at three years old he is continuing to fight on.

The faulty gene which causes RCDP was discovered by Dr Nancy Braverman, who is based at McGill University Health Centre (MUHC) in Montreal, Canada. As well as furthering research, Dr Braverman has been helping to support families affected by the devastating condition.

Mikey added: “The lady who actually discovered the faulty gene is a specialist from Canada. We sometimes Skype her. She also runs a get-together for families every year in America, but that would be too far to travel with Cooper.”

In addition to the crowdfunder, the Cottage Family Centre in the Templehall area of Kirkcaldy has offered to support the family.

They will need equipment including a specialised buggy, car seat and bed.

Cooper recently spent a night in hospital after his temperature spiked and he suffered a seizure. Mikey said he and Sammy had to be vigilant during the winter months because Cooper was susceptible to infections.

Kirkcaldy Rugby Club got involved after first team member Owen Bonner, 21, babysat Cooper.

The club supports charities each year and Owen’s dad Jimmy, 56, said this year they wanted to help a cause closer to home.

“Owen told me about this wee boy,” he said.

“He has a very, very rare condition and is only one of 100 worldwide, and the only one in Scotland.”

The rugby club will be in fancy dress for the loony dook at New Year.

Jimmy said their outfits would have a superhero theme.

“They’re going to be in capes and speedos,” he added.