Youngster is one of a kind - Whittlesey boy Cody is the only person in the world to have rare genetic disorder
PUBLISHED: 10:14 28 November 2014 | UPDATED: 10:14 28 November 2014
A Whittlesey couple are fund raising for the future after discovering their baby is the only person in the world to have a rare genetic disorder.
Little Cody Stanier was born in December 2013 and from birth suffered feeding difficulties which led to poor weight gain, not helped by severe reflux, where a baby cannot keep down their milk feeds.
After numerous hospital investigations and at the age of six months, his parents were given the news that Cody has chromosome abnormalities, which means as he approaches his first birthday he already has significant development delay.
His dad James said: “Cody is unable to sit unaided and is nowhere near ready to stand.
“His future is uncertain as no one else in the world has the same combination of chromosome abnormalities as him.
“We have been told that he may never walk or talk and that he may suffer seizures.
“We just focus on each day as it comes. At the moment we are concentrating on helping him learn sign language - he can sign for milk - and also build his muscle tone.”
Cody has swimming sessions, regular massage and physiotherapy as well as using Whittlesey’s sensory room at the Ormiston Children’s Centre.
The short term aim is to buy sensory equipment to use at home and an adapted trike for the summer.
Long term the aim is to set aside a fund to enable them to buy specialist equipment he needs as he grows up.
Already their Hope for Cody Facebook page and other charity events has prompted the donation of a £400 car seat by Eden Enterprises vehicle recovery at Whittlesey and a car that was donated by TNT at Peterborough.
Thanks to the persistence of an NHS physiotherapist they also have the use of a seat, worth £2,000, which enables Cody to sit upright.
“Cody is unique, he is a very special boy. Who knows what the future brings. We just want to make sure we have the funds to buy everything that he may need as he grows up.
“People have already been incredibly generous and I want to say a big thankyou to everyone who has supported us so far. We are very grateful,” Mr Stanier said.
A prize bingo night is being held for the Hope For Cody charity by Jim Wyllie at Whittlesey Conservative Club on Saturday 29 November starting at 7pm with eyes down at 7.30pm. All welcome.