Wednesday 17 January 2018

Boy (5) with rare genetic disorder left waiting for a suitable home

The Grimes family, David, DJ, Pippa and Caroline. Photo: Dave Gaynor
The Grimes family, David, DJ, Pippa and Caroline. Photo: Dave Gaynor
DJ’s feet before surgery in 2011
DJ's feet after the operation. Photo: Dave Gaynor Newsdesk Newsdesk

The mother of a five-year-old boy born with extra toes and who is expected to lose his sight by the age of 10 has been waiting for a suitable home for her son for years.

DJ Grimes was born with Bardet-Biedl syndrome; a recessive genetic disorder characterised by obesity, retinal degeneration, extra fingers and toes, and intellectual impairment.

"When I got my three months scan I did notice an extra finger but they told me it was in my head," said Caroline Grimes (27), who lives with her husband David (28) and two children, DJ and five-month-old Pippa, in Bruff, Co Limerick.

Caroline and David believe their current home is unsuitable for their son. They say they have been on the housing waiting list for the past six years.

"We are renting and we are not entitled to any adaptation of the house," explained Caroline.

"I have the carer's allowance and domiciliary but I'm on the road all the time with him, going to hospital appointments. We get rent supplement but now we have Pippa they want me to pay more money towards the rent. We are very confined here."

The couple have already lost a little girl, Kayla, to the syndrome.

"She died just 15 minutes after birth. I fell pregnant with her after we had DJ," Caroline explained. Pippa, who is five months old, is waiting to be tested for the syndrome.

Irish Independent

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