Mum hoping to help

12:43pm Tuesday 2nd November 2004

A MUM whose daughter suffers from a rare genetic disease has launched a charity for other families.

Adrienne Burton, 35, from Bromley, has joined another mum, a nurse and her daughter Jessica's doctor at Great Ormond Street Hospital (GOSH).

The legal secretary, who has to work from her Heron Court home because her four-year-old daughter needs round-the-clock care, hopes families will benefit from the Children's Hyperinsulinism Fund.

The charity, which comes under the GOSH umbrella, aims to help pay for research into Persistent Hyperinsulinaemic Hypoglycaemia of Infancy (HI).

Miss Burton says £13,000 has already been raised for the fund, which will be officially launched at an event in central London on Saturday.

"Ideally, we want to raise £100,000 a year to pay for two researchers and specialist nurses," she added.

With HI, the pancreas produces too much insulin, which can prevent the brain receiving critical "fuels", such as glucose. In Jessica's case, when her blood-sugar level drops she becomes immobile and if it is low for more than two hours, she could become seriously brain damaged or even die.

The youngster spent the first three months of her life in GOSH and had seven general anaesthetics for operations before she was eight weeks old.

Last year we reported on Miss Burton's unsuccessful battle with council officials after they refused to give her a disabled parking pass for Jessica who, despite having regular insulin injections, could fall into a coma at any time.

Although Miss Burton gets full disability living allowance for Jessica, her Blue Badge application was turned down when Bromley Council ruled her daughter did not qualify because she walks normally most of the time.

The badge would have exempted the single mum from the Congestion Charge in central London, where Jessica still goes for tests, and allowed her to use disabled parking bays.

For more information about HI, the charity or its launch event, visit hi-fund.org or call Miss Burton on 020 8249 3887.