BRENTWOOD: Funds are running low for Tilly

A FAMILY is desperately seeking fundraising ideas to help their brave girl who suffers from a rare genetic condition and is about to undergo yet more excruciating surgery.

Tilly Bailey, 11, from Hutton, who captivates the hearts of everyone she meets, is one of only a few people worldwide to suffer from the rare condition known as NOMID or CINCA.

Generous Gazette readers have already helped send Tilly on her twice-yearly trips to Washington, USA, where she receives specialist care at the world's leading facility on her condition while research is carried out.

Her father, Colin Bailey, 38, said between £70,000 and £80,000 was drained from Tilly's appeal fund when the family had to spend six months in America in 2007 while she had surgery and rehabilitation to correct her dysplastic hips, which are a separate problem to her NOMID/CINCA.

But Mr Bailey said they had just been told the metal fixings had come loose on one side, in yet another major setback for Tilly.

They had planned a research trip to America this month but now they face a prolonged stay for more crucial surgery.

He said: "The fund will be hit considerably, so the fundraising drive becomes a key aspect of our lives to ensure Tilly can get the help she desperately needs.

"The research visits to America are so important and when things like this keep going wrong it is such a shame.

"We didn't want this to happen, we never wished for this but it is here, and we have to deal with it.

"We don't know how much it is all going to cost."

He added: "You just think she has gone through all this already and has been so brave.

"But now she has got to experience it again.

"She always has bad luck but she is still as happy as anything.

"Still, we are really upset for her and would welcome anyone who can do anything to help."

Mr Bailey said the most money they ever had in the fund was about £100,000, but now it stands at just £20,000. Mr Bailey said every crucial research trip costs about £5,000. and unexpected surgery is an added burden.

The family was at the George and Dragon pub in Mountnessing last week to raise funds at the pub's re-launch after a £1million transformation, but the family is now calling for more help.

If you have any ideas to raise funds or would like to donate cash, call Colin Bailey on 07975 978082, email colinbailey828@btinternet.com or log on to www.tillysappealfund.com