Family’s battle with incurable disorder

A NORTHSIDE community will come together at a fundraiser next Saturday (February 25) to help send a local mother and daughter suffering from a painful, incurable disorder to the UK for specalised treatment.

Marie Fitzgerald and her daughter, Sheena, have both been diagnosed with Ehlers Danlos Syndrome (EDS), which causes chronic pain and affects tissues that support the skin, bones, blood vessels and vital organs.

Sheena has shown signs of the condition almost from birth but she remained undiagnosed throughout childhood. She had been born with very loose ligaments and her knee could be bent towards her head at a 90 degree angle and her ankles could bend so far they could touch her shins.

As she got older, her joints began to dislocate frequently and she learned how to put them back into place herself. She loved running but eventually had to give it up due to ankle twisting and chronic pain in her knees.

Doctors were unable to determine what was wrong and Sheena was told she would probably grow out of her problems.

However, her symptoms continued to worsen and she was eventually diagnosed with EDS when she was 13, but found there was little specialist treatment or medical expertise on the condition available in Ireland.

Sheena spent most of her teenage years isolated in pain but with the help of a wheelchair and support from her family, managed to continue with her education.

“I had no social life at all,” she says. “Because there is no specialist in Ireland there was nobody I could see about my worsening condition.”

She now still lives in extreme discomfort, suffers chronic fatigue and has very bad acid reflux but there is no specialised medical treatment for EDS sufferers in Ireland.

Sheena’s mum only found out she had the same condition when searching for help for her daughter. Her symptoms were less severe when she was young, but she always had a tendency to sprain ankles and became very fatigued from time to time.

However, she suffered a fall when horse riding as a teenager and developed back problems that affected her intermittently. After the birth of Sheena, her second child, the back problem began to worsen and became debilitating.

Eventually, the pain got so bad she had to give up work and her husband, Colum, became her full-time carer. They were forced to sell up home and move to Cavan and former friends began to drift away, leaving the family isolated and poverty stricken.

“Only for work having a benefit night for me and for the kindness of family and friends and the Public Service Friendly Society, who gave us loans, we would have had not enough food or heating,” Marie recalls.

After a lengthy battle with bureaucracy, the family eventually got disability allowances and in time were able to return to live in Dublin.

It hasn’t been easy for the Fitzgeralds to go public with their story but they’ve been encouraged by locals in Whitehall and across the Northside who are inspired by their bravery and determination to get on with life.

A group of supporters recently set up a treatment fund for the family as there’s no EDS funding available in Ireland. It’s hoped a series of local events will raise the €7,500 needed for specialist therapy in the UK that will improve quality of life for the Fitzgeralds.

The next event takes place at Na Fianna GAA Club on Mobhi Road at 8pm on Saturday, February 25, where there will be a fun night of entertainment and some great raffles and auctions with prizes including a signed Dublin GAA jersey. Tickets cost  €10 and are available on the night.

Donations can also be made through Bank of Ireland IBAN IE22 BOFI 9067 5026 6595 32, IBIC BOFIIE2D or online at gogetfunding.com/please-help-marie-sheena.

Further info available at facebook.com/Marie-and-Sheenas-Treatment-Fund-700948280068810