New charity for rare disease

A 22-YEAR-OLD mother whose child suffers from the same rare condition as supermodel Katie Price's son is launching a charity to help raise funds for research into the illness.

A 22-YEAR-OLD mother whose child suffers from the same rare condition as supermodel Katie Price's son is launching a charity to help raise funds for research into the illness.

Heidi and Rob Parker's daughter Courtney has Optic Nerve Hypoplasia (ONH), an illness that can cause damage to eyesight, learning difficulties and mental health problems.

Courtney, two, is registered blind and the Stowmarket family has been advised that her condition is unlikely to improve. It is the same as that suffered by Harvey, the son of model Katie Price, formerly Jordan.

She has no peripheral vision, has to wear special glasses and her parents will not know if she has any developmental problems until she turns five.

Now Mrs Parker is establishing a charity, Living with ONH, and has launched a website, to help support other families living with the same condition.

She said: “When Courtney was diagnosed blind we were absolutely devastated, we could not believe what we were being told.

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“We want to try and help other parents who are going through this. It's scary and you wonder who is there for you, what help is available.

“The hospitals have been so fantastic that we want to help them to carry on giving their care and service, it is our way of saying thank you, sometimes the words are not enough. We also want parents to know that they are not on their own, others have been through this.”

The couple and a group of supporters have already raised £1,500 from their first event earlier this month through a sponsored walk from The Meadow Centre in Stowmarket to Asda in Ipswich.

The money, raised under the auspices of the new organisation, will go towards endocrine research into the condition at the Great Ormond Street Hospital in London, where their daughter has spent so much of her time.

They are now also planning a fancy dress Christmas party on December 6, from 7pm, at Stowmarket Football Club.

To book tickets, which cost £5 in advance, call the family on 0759 313 3182.

INTERNET:

www.livingwithonh.com