Friday 28 November 2014

Huntington's sufferer weds partner despite fears 'he wouldn't make it'

By Aishling Phelan

Published 06/05/2014 | 16:12

Christy, pictured with a carer, suffers from Huntington's disease.

A carer married her partner who suffers from the crippling Huntington’s disease at a beautiful ceremony at the weekend.

Anne O’Shea wed her wheelchair bound fiancé Christopher in Limerick in a very "moving" ceremony. 

‘‘It was a day of complete joy and happiness and the ceremony was so moving,’’ Anne from Drimnagh in south Dublin told independent.ie.

Christopher Clarke requires full-time care and receives 38 hours-a-week from a HSE care worker. This has allowed Anne to continue working.

She recently spoke of her struggle to keep her job and look after her long-term partner Christy who needs constant assistance.

‘‘Christy was sick in the days running up to the ceremony. We didn’t know if he would make it,’’ she said.

Huntington’s disease is a neurodegenerative genetic disorder that affects muscle coordination and leads to cognitive decline and psychiatric problems.

Anne recently told independent.ie that she was fighting to keep Christy’s medical card.

His card had been under a monthly assessment even though he suffers from a life-long condition.

Anne contacted TDs in her local area explaining her situation and Sinn Fein’s Aengus Ó Snodaigh replied to the worried carer.

‘‘On the 29th of April, his medical card was made permanent until 2017. It never stopped but it was renewed each month while he was being assessed to be eligible,’’ Anne said.

Worrying about Christy’s medical card added to the stress of planning the wedding, Anne explained.

More than 130 people attended the wedding which featured a photo booth, a lavish chocolate fountain and an elegant reception at Bulgaden Castle.

‘‘He was on a high all day and loving every minute,’’ Anne spoke about Christy’s excitement on the big day.

Wedding planners from ‘Co-ordination Made Easy’ heard Anne speaking on RTE Radio One in January and offered to help the couple with their wedding to make the day extra special.

‘‘We have been through some extreme highs and lows with the disease over the last 13 years, we were planning on getting married much sooner than now but the disease got in the way and took over our lives,’’ Anne told Joe Duffy.

The couple met in Cyprus in 2001 and were engaged within a year, before Huntington’s disease took hold of Christy.

Christy had warned his fiancé that the disease ran in his family.

Anne believes there is a stigma attached to Huntington’s disease because very little is known about it.

She said the nurses, carers and volunteers that work with her fiancé give him ‘‘the will to live’’.

Huntington's Disease Association of Ireland (HDAI) has provided information and vital support to Christy and his family members.

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