BY SEÁN P. FEENY
A YOUNG Gaoth Dobhair boy born with a form of spina bifida is trying to raise awareness of his condition in the lead up to World Spina Bifida Day.
Conor McEntee (6) has a mild form of spina bifida classed as Myelomeningocele and he is campaigning for what is only the second ever World Spina Bifida Day on Friday, October 25.
Spina bifida is a relatively common condition, which affects about one in every 1000 children born per year in Ireland. Ireland has one of the highest incidences of Spina Bifida births in the world.
Spina bifida is the most common neural tube defect (NTD) which causes incomplete development of the spinal cord. Translated, it literally means ‘split spine’.
The son of Fiona and Kenny McEntee, Middletown, Derrybeg , who attends St Mary’s NS, is a huge GAA fan and his favourite players are Donegal stars Karl Lacey and, of course, his fellow Gaoth Dobhair men Odhran McNeilis, Neil and Eamon McGee. Odhran, Neil and Eamon and Termon’s Michael Boyle are already showing their support for World Spina Bifida Day by wearing the wristbands Conor gave them recently.
Conor’s mother Fiona said they had never heard of the condition until their son was born and gradually learned more about it.
“Conor has a very mild form of spina bifida and wears braces on his legs, but he can be very active. There are different levels and we want to raise a lot more awareness of this.”
Conor and his family will be selling the wristbands and pins, raising awareness and funds for Spina Bifida Hydrocephalus Donegal Branch and no doubt his siblings Cian (10) and Emma (3) will be there to help the campaign.
Fiona said: “We will selling the pins and wristbands at Molloy’s and Gallagher’s in Derrybeg on World Spina Bifida Day, October 25, from 10am until 4pm.
“If anyone would like to join us or help by selling them in another location, they are welcome to contact me (Mobile 087 293 1874).
“There are 80 children born with spina bifida in Ireland every year, so we are delighted to see that the condition is getting more attention through World Spina Bifida Day and hopefully we can get other well-known athletes or public figures on board to support our cause.”
About Spina Bifida Hydrocephalus Ireland
Spina Bifida Hydrocephalus Ireland was established in 1968 by a small group of parents whose children had Spina Bifida and/or Hydrocephalus. These parents continue to dedicate their time to the association and are now elected volunteers on our Board of Directors as well as being elected to Branch Committees nationally.
Today, SBHI has over 3 000 members and has branches in all four provinces, as well as a professionally run National Resource Centre based in Clondalkin, Dublin 22
Well-known Letterkenny disability campaigner Frank Larkin was recently elected as the chairman of the association.
Frank, who is a member of the Donegal Branch, was elected at the National conference of the organisation in the Clarion Hotel, Sligo.
For more information on the condition log onto www.sbh.ie – The website is a good source of information about the condition but also includes Support networks available to individuals and families affected by the condition.