'This charity helped me through the worst times'

A Surrey mum is urging people to donate to a charity that helps families who have a child with life-threatening or terminal illness.

Kirsty Harle, from Epsom, is fronting a fundraising campaign for the Rainbow Trust, which supports her seriously ill son, Jesse.

Jesse was a happy baby and was developing well before he had a seizure at eight months old that "changed everything", according to the charity.

He was rushed to A&E, where he was found to have lost control of all his motor skills, and was later diagnosed with glutaric aciduria type 1 (GA1), a rare and life-threatening metabolic disorder.

Jesse is in a wheelchair, unable to hold up his head or sit, requires a feeding tube and is non-verbal due to his condition.

He also has dystonia - involuntary and very painful muscle contractions that cause twisting and abnormal movements.

"Rainbow Trust has supported us through the most difficult time of our lives... without them I wouldn't be where I am today," said his mother.

Kirsty added the charity paired her with Sharon, a support worker, who drives them to hospital.

She said getting Jesse to his many regular hospital appointments was a struggle, but that Sharon has made their lives "so much easier".

"Sharon's support has made my life and Jesse's life a lot more comfortable," Kirsty said.

"I struggle to get out of the house with Jesse and my 10-month-old son.

"Without Sharon's help, I am completely stuck in the house."

Kirsty added that Rainbow Trust gives her emotional support too.

"I feel really privileged to have Sharon in my life and that I can call on her if I need," she said.

Last year Rainbow Trust family support workers drove more than 800,000 miles, according to the charity.

It says it needs support to replace its ageing fleet of cars and cope with the rising cost of petrol.

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