Suzanne Clow wants a special gift for her 30th birthday.
The local mother-of-three, including twin baby boys who have cystic fibrosis, has been told a cure for the condition may be found while the boys are still children.
Now she wants to help researchers any way she can.
Suzanne’s family and friends have been asked not to bring gifts to her birthday party tonight.
Instead she has asked for donations of money to fund research into cystic fibrosis.
Admitting she never used to give much thought to donating towards medical research, Suzanne said her attitude changed late last year when her twin sons Jack and Will, now seven months, were diagnosed with the debilitating condition.
She and husband Bruce were first alerted to a problem when post-natal tests came back abnormal.
They then had to endure the wait while doctors determined just what was wrong.
“It was terrible not knowing,” she said.
She admits to being “devastated” when first told of the condition and initially “mourned” for the healthy children she thought they had.
But six months on and despite difficulties that include the boys needing daily physiotherapy, being more susceptible to colds and flus and needing to travel to Sydney every couple of months, Suzanne is positive about the situation.
“I try not to think about it – it is my job to keep them healthy.”
The 70 guests attending the party tonight have been invited to bring an anonymous donation and at the end of the night a cheque will be written to go towards the research.
“Even if we only raise $200, that’s $200 they previously would not have had,” Suazanne remarked.
She said that work currently being done in the area of gene therapy was returning promising results for cystic fibrosis patients, but each clinical trial costs about $40 million.
“People don’t realise what it costs – you don’t understand until you are involved,” she said.
Suzanne also hopes people will become more aware of the costs involved with finding cures for conditions such as cystic fibrosis.
This article first appeared in Hangzhou Night Net.