A mother who lost her baby to one of the rarest genetic disorders in the world, hopes to train as a nurse in her memory.

Tiny Rachel Garforth, of Idle, Bradford, born 18 months ago with a chromosome abnormality unheard of in the UK, has died from a related illness.

Now her mother Nikki, 25, says she wants to work with other children with special needs and is considering going back to college to train as a nurse.

"I would never have thought about it before Rachel," she said,

"But when Rachel was born she just opened up a whole new world for us. There are so many friends and new people we have met through her and it would be nice to give something back in her memory."

Rachel was born deaf, with a cleft palate, low-set ears and a cyst at the base of her spine. She spent most of her short life in and out of hospital but doctors could not predict her life expectancy as so little was known about the condition.

Last week she developed a chest infection and was taken first to Bradford Royal Infirmary then transferred to Leeds General Infirmary where, wired to 18 machines in intensive care, she died from pneumonia late on Sunday night.

Nikki, her husband Steven, and their seven-year-old son Daniel, have been left devastated by Rachel's sudden death.

"We sort of knew this day would come eventually, but we didn't think it would be so soon," said Nikki.

"She was always suffering from chest infections, but she bounced back so many times.

"She was so full of smiles all the time and kicking her feet. She had just got to the stage that babies chuckle."

In 'normal' couples, the abnormality, caused by two broken chromosomes, has a one in 14 million chance of surfacing.

But doctors have since discovered Steven is a carrier of the defective gene and the couple face a 50-50 chance that another child would inherit the abnormalities.

They have now decided not to take the risk, with Steve recently undergoing a vasectomy operation.

Nikki, a home care assistant who is the local representative of the chromosome disorder group Unique, said she had searched for information on the condition, but as far as she knew, Rachel was the only case worldwide.

Close friend of the family, Rachel Howker, whose husband Paul raised £2,000 for multi-sensory equipment for Rachel by shaving his head, said she had been a real battler. "She was just so sweet and lovely - such a bonny baby," she said.

Dr Peter Corry, consultant community paediatrician based at the Bradford Child Development Centre who looked after Rachel, said she had had an extra piece of chromosome number seven which slowed down her development. He said: "We do see several children each year with chromosomal problems, but this particular abnormality is extremely rare and we could not find any reports of it before."

Rachel's funeral service will be held at Rawdon Crematorium on May 22.

The collection at the funeral will be split three ways between St Luke's Hospital, Bradford, Leeds General Infirmary and Unique.

e-mail: suzy.poole

@bradford.newsquest.co.uk

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