Sharon to connect with rare illness sufferers

A BRAVE mother battling a life-threatening brain illness is hoping to raise enough funds to set up a childcare facility for parents with serious medical problems.

Sharon Houlihan, 34, from Slieverue in Co Kilkenny, has already set up a website to offer support and information to people diagnosed with rare conditions after coming through seven operations herself.

Diagnosed last year with a brain aneurism caused by an inoperable Arteriovenous Malformation (AVM), she is now waiting on funding to travel to Britain for a course of gamma radiation therapy which is not available in this country.

“Without the radiation I’m still at risk of a brain haemorrhage or a stroke,” she said.

Experts originally thought that her condition was untreatable but, having survived seven operations, she is now a candidate for radiation treatment.

Sharon first became ill in April of last year, after having her second child, and visited her GP and hospitals a number of times suffering from headaches, dizziness, confusion, and visual problems before eventually finding out what was wrong with her.

“For me, to walk into a hospital where they don’t know what’s wrong with you is something that I’ll never forget,” she said.

She said that a lack of information on her condition, along with the loneliness associated with dealing with a devastating illness, prompted her to set up the Sharonsplace.ie website earlier this year.

“People need to be able to log on and say, ‘I’ve something rare’. When you wake up at 4am and you want to talk to somebody, or get information, or find someone who has the same illness as you.”

She and her husband Jim have two sons — Dean, five, and Alex, 19 months — and they have been relying on the help of family, friends and neighbours to survive. “I’m very, very tired and I can’t mind the kids,” she said. “The fear is that, if I have a stroke, I can’t expect a five-year-old to try and deal with that.”

A group of 30 people are now taking part in a fun run next month in Waterford to raise funds for an MRI scanning machine for Cork University Hospital — where Sharon was eventually diagnosed with having the illness.

Eventually she wants to establish a Sharon’s Place premises where support such as childcare will be available to parents who find themselves in a similar position.

It’s a long-term project but one to which she is committed. “I need a focus and something to stop me thinking about my head. The more I focus on something else, the less pain I feel,” she said.