£4,000 Appeal to help keep son safe (From This is Hampshire)

£4,000 Appeal to help keep son safe

7:00am Friday 30th July 2010 in

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AN Andover family is hoping to raise £4,000 for a specialist bed for their son who is the only person in the world known to have two rare genetic conditions.

Connor Hitchings, aged nine, was born with Cardio facio cutaneous (CFC) which is a rare genetic disorder that typically affects the heart, facial features and skin in about 300 people worldwide – but he also has Septo Optic Dysplasia (SOD), which affects the optic nerve and brain, and the two combined is probably unique.

He was close to dying during his first two years when he was in and out of hospital undergoing numerous operations.

Connor, who lives with his family in Kingsway Gardens, continues to have regular hospital appointments, physio and other therapies, he is also fed through a tube and cannot talk.

His mother, Kate Hitchings, said that like most other children with similar conditions, he got quite frustrated and sometimes self-harmed.

She added that his current bed had a wooden frame and he could hurt himself badly, whereas the Cosyfit bed had a fully padded interior, high sides and a mattress base.

“We need the bed for safety reasons because he is getting more mobile and stands up in his bed, this would stop any additional harm,” she said.

“He fell out of the bed we have, so it’s quite important that we get it for safety reasons.

“We have had to buy crash mats with his current bed, it is a specialised bed, but it’s not suitable for him.

“We have got about £605 already raised, there’s a few fundraising events in the pipeline and a couple we have got organised.”

In addition Connor’s step-sister, Hannah Vincent, aged 16, has pledged to have her head shaved in September in a bid to raise some vital funds towards buying the bed. And now Andover-based children’s charity Bravehearts is lending its support.

Kate added that the family hoped to smash their target because an additional £2,000 would help them buy a Voyager bed, which would make travelling away from their house overnight much easier.

For more information on future fundraising events and to donate visit braveheartscharity.webeden.co.uk and click on Connor’s appeal.