Fun day will raise cash to fight rare disorder
A FUNDRAISING afternoon of fun and games is taking place tomorrow to help fight a rare genetic disorder which can often prove fatal.
The event has been put together by Kerry Hughes, whose daughter Ellena May Page died of Zellweger syndrome aged just nine months old.
When Ellena was born in August 2011, Kerry and her then partner soon realised that something wasn’t right with their daughter.
Doctors initially thought she had Downs syndrome, but tests soon disproved that.
Kerry, from Southsea, said: ‘She was treated like a guinea pig for two months. They did so many blood tests. We felt like terrible parents – how do you explain to a two-month-old why you are sticking needles in them?’
At three months, doctors finally diagnosed her with Zellweger syndrome – a disorder which means the body has no peroxisomes, the cell structures that break down toxic substances and synthesize the fatty acids that are necessary for cell function.
Ellena was blind, deaf had low muscle tone and brain damage, and the family were told she would not live long.
Kerry said: ‘It was like being in a horror movie that you can’t get out of.
‘But we were determined to not let it affect her life and we wanted to make the most of the time we had with her and make her as happy as possible.’
After Ellena’s death, Kerry said: ‘When they told me no research was being done, it was like being told, it’s rare, so your child is not worth it.’
But it was thanks to the internet that she was able to connect with other families similarly affected, and in September last year a group of them met up in Birmingham
‘It was then the decision was made that actually, we can do something about this,’ she added.
‘A team of parents, including myself decided we would set up our own charity to raise awareness, support families in the UK so they do not feel alone dealing with the syndrome and with the long-term goal of funding more research.’
Zellweger UK became an official charity in April, and Kerry is its treasurer.
The event takes place at The Arts Lodge in Victoria Park, Portsmouth from 2pm to 6pm tomorrow. There will be face painting, children’s tattoos, cake sale, a bouncy castle and many more fun activities, plus an enchanted garden as well as music from the 21-piece Folks in Harmony choir.
For more information go to zellweger.org.uk.