The nine-year-old, who suffers from Shwachman-Diamond Syndrome, was on Calendar with her mum Tracy and another Yorkshire woman, Jules Boughen-Parkin, whose family is also affected by the condition.

Shwachman-Diamond Syndrome is a genetic condition which can lead to leukemia and there are only 30 known children with it.

The only charity for the illness – Shwachman-Diamond Support – has been raising money to travel to America to find out more about the condition.

Tracy said: “The support group has raised enough money to send out a medical and support team to Boston to a Shwachman-Diamond conference in June, and to buy a piece of lab equipment to help with research for our children.

“The problem now is that we need money to go ahead with the research and to put into place what the findings are in Boston.

“This is the only hope our children have. Due to the condition being rare and not having many sufferers, we do not qualify for NHS funding.”

Hollie, of Boundary Street, Heckmondwike, suffers from allergies, black-outs and fatigue, but regularly speaks in public about her condition, as she did on Calendar.

Tracy said: “Me and Jules, who has a three-year-old daughter and a niece with the condition have joined forces in fund raising.”

This year various tombolas will be held, but the two main events are a parachute jump in Bridlington on September 16 and a charity ball on November 2 at the Holiday Inn, Brighouse.

Tracy said: “I’m one of the jumpers. I am so scared as I have a real fear for heights – I almost have a heart attack using my step ladders! But that is nothing to what Hollie faces every day.

“Although caring for our children is hard work, tiring and worrying we have to get the strength to fight and work hard for the charity. It is heart-breaking watching your child suffer and be in so much pain. As a parent you have to do the best you can to help your child.”

If anyone would like to take part in the parachute jump, buy a ball ticket or sponsor either event, email t.horsfield@ hotmail.com to contact Tracey.