Family's fight for vital research

A MOTHER is launching a fundraising campaign to raise cash for research into the rare condition which afflicts her two-year-old daughter.

John Howard

A MOTHER is launching a fundraising campaign to raise cash for research into the rare condition which afflicts her two-year-old daughter.

Heidi and Rob Parker's daughter Courtney has optic nerve hypoplasia (ONH), an illness that can cause learning difficulties, mental health problems, damage to eyesight and can even prove fatal.

Courtney is registered blind and the family, from Stowmarket, has been told her condition is unlikely to improve.

It is the same as that suffered by model Katie Price's son Harvey.

Courtney 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.

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Mrs Parker said they had received help from Great Ormond Street Hospital for Children (GOSH), in London, and now she wants to set up a fund to support other families living with the condition, and support research at the hospital.

The hospital specialists diagnosed a problem, undertook further tests, and were incredibly supportive after it emerged Courtney was unwell.

Mrs Parker, 22, said: “She is bubbly, cuddly, I love her to bits. We are adapting to her condition, and when we are at home, or in familiar surroundings, it is fine.

“But it can be heartbreaking too. We took her to the zoo for her birthday and she could not see the lions, just kept making roaring noises and pretending to be one.

“GOSH has a special research fund and we want to help. The money we have raised could help others, in some small way, who have this condition.”

Mrs Parker is organising a sponsored walk, The I Walk, from The Meadow Centre in Stowmarket to Ipswich on November 2, starting at 11am.

She is also planning to skydive, despite being afraid of flying and heights, organising a music festival for local bands, an auction of donated celebrity memorabilia on eBay, launching a website, a five-a-side football tournament with trophies, and a craft stall in the town nearer Christmas.

If you would like to help with the fundraising, join an event, or make a donation, e-mail the Parkers at livingwithonh@hotmail.co.uk .

Do you know someone who is doing something special for charity? E-mail starnews@eveningstar.co.uk or write to Your Letters, The Evening Star, 30 Lower Brook Street, Ipswich, IP4 1AN.