We had never heard of Spina Bifida before

As Cork Spina Bifida and Hydrocephalus, Association celebrates its 35th anniversary this month, and holds its first ever charity ball, CHRIS DUNNE talks to two families about the support they got
We had never heard of Spina Bifida before
Graham Leahy with his partner, Charlotte O'Dea and children Taylor and Calvin.

“THE Association offered us support and helped pick us up after we lost our daughter, Nevaeh, in 2015,” says Graham Leahy, from Baker’s Road.

Graham is a committee member of Cork Spina Bifida and Hydrocephalus Association, a voluntary organisation made up of parents of children with the disability or members with Spina Bifida.

“My daughter, Neveah, which is heaven spelt backwards, was born with a birth defect, Anencehaly,” says Graham.

“It is a condition where there is a major absence of a portion of the brain. We knew that was the case before she was born and that she’d never be as good as Calvin,” says Graham, whose son, aged eight, has Spina Bifida.

The association were also there for them when Calvin was diagnosed.

“It was very traumatic for us,” says Graham. “We got to meet Neveah only briefly. The Cork Association of Spina Bifida and Hydrocephalus helped us out with their support and helped us financially as well.

“My partner, Charlotte, and I, picked out Neveah’s casket when we learned that she wouldn’t live.

“The continued support from the association kept me focused and it provided a distraction that helped me deal with the reality and carry on with life,” says Graham.

“‘Are you ok?’ is all it takes to make you feel better when you are going through, or have gone through, a tough time. Counselling sessions are available too for parents.

“When Calvin was born, we didn’t know what Spina Bifida was; we’d never heard of it.”

The couple gathered valuable information and support from the association.

“We got direction,” says Graham.

Calvin, who is a keen football fan, along with his sister, Taylor, aged seven, are getting to know their new baby brother, Jaxon, born earlier this month.

“They are all excited,” says Graham. “At first Calvin didn’t want to know about him,” says Graham. “Now he does!”

Graham is very excited about the first ever charity Glitter Ball, which will raise awareness and funds for the Cork branch of Spina Bifida and Hydrocephalus.

“We have sponsorship from Cork companies associated with us for over 35 years,” says Graham.

“Great spot prizes are on offer for raffle and auction, as well as surprise boxes on the night. It’s going to be a great event.”

Another family are also strong in their praise of the work carried out by the association.

When Cathal O’Neill, aged 14, started walking on his first birthday, he surprised everyone.

“I remember his medical team was surprised he was starting to make shapes,” says his mum, Pauline, from Cathedral Road.

Cathal has a very rare form of Spina Bifida.

“He was 20 weeks old when we found out that it was a very rare form,” says Pauline, who is also a committee member of Cork Association of Spina Bifida and Hydrocephalus.

Cathal was determined not to miss out on his first visit from Santa.

“It was a whirlwind birth,” says Pauline. “He was home in time from Our Lady’s Children’s Hospital in Crumlin to meet the rest of the family on Christmas Eve after he had surgery on December 22.”

Cathal has two older sisters, Sarah and Ciara, and an older brother, Terry Jnr.

The ‘baby’ of the family has made great strides, battling pneumonia at six weeks old and kidney failure at eight weeks.

“He battled for his life for weeks when he contracted meningitis,” says Pauline. “He was only four months old.”

Cathal required surgeries due to kidney failure and he underwent numerous complex back surgeries.

“Cathal had a 12 hour operation in Crumlin to have the gap in his back closed when he was four,” says Pauline.

“Dr Watson, now deceased, said, ‘we can figure this out’, and we turned the corner. It was tough going at times and the risks were high of other conditions like scoliosis. But Cathal is sitting up straighter and stronger since he started going to the gym. We want to keep him as strong as we can.”

Cathal O’Neill.
Cathal O’Neill.

And he has a strong voice. Pauline smiles.

“If there is a microphone around Cathal will sing! He met One Direction and his favourite song that he sings is Despacito by Justin Bieber. He is very verbal and he does a video blog.”

Cathal likes calling the tune.

“His older sisters, Sarah and Ciara, are always there to help,” says Pauline.

“Cathal often sits and waits for his sisters to do things for him. The girls are like mother hens with Cathal and then they kill each other!”

Cathal is a typical teen.

“He can be moody and he can be feisty and funny,” says Pauline.

And he is always encouraged to learn and explore what his capabilities are. His talents are shining brightly.

“He appeared as the Cheshire Cat in a production of Alice in Wonderland!” says Pauline.

Pauline says the Cork Association of Spina Bifida and Hydrocephalus helped her to learn more about her son’s condition.

“The support was wonderful,” she says.

Isolation can be a factor dealing with a disability both for families and for the person with Spina Bifida.

“You have worries about your child and you are looking for answers. Sharing information with adult members who understand over a cup of coffee is really helpful and supportive,” says Pauline.

“Life is good. You make the most of it.”

Pauline, along with fellow-committee members, has done her bit to support and help raise funds for Cork Spina Bifida and Hydrocephalus Association over the years.

“We meet at the Abode Centre in Skehard Road,” says Pauline.

“We organise two big events every year, the summer barbecue and the Christmas party, which are both very well attended by the families and the children.

“The social events give members a chance to get together and make new friends. Two afternoon tea days help to raise funds as well.”

A lot of work goes into making these events happen.

“Everyone rows in to help,” says Pauline.

“Church gate collections generate some income too.

“We aim to support members financially to help towards costs which include trips to hospitals, often to Dublin or to London, adaptation to their homes, and the equipment necessary to attend school and college,” says Pauline.

“And we can make a contribution to respite care as well. There are grants available to families who can apply to us who need to make adaptations to their homes for a family member.”

Pauline says raising funds for the association is a way of giving back.

“The association has been very good to us,” says Pauline. “The Shine Bright for Spina Bifida’s Charity Glitter Ball is another way for us to show our support for the association. The response has been good and there are still some tickets for the ball.”

ABOUT THE BALL

Shine Bright for Spina Bifida Charity Glitter Ball, with four course meal, band and DJ, takes place from 7pm until late, at the Rochestown Park Hotel on Saturday, October 20.

Tickets are €50. Email:corksbhassociation@gmail.com or phone 087-6120591 or info@sbhi.ie

ABOUT SPINA BIFIDA

Spina Bifida affects one in every 1,000 children born in Ireland. On average nine children are born in Cork with Spina Bifida every year. Ireland has the one of the highest incidences of Spina Bifida in the world.

The condition affects the development of the spine, spinal cord and the brain. For everyone born with it, at least one spinal vertebra is only partly formed and the spinal cord at that point and below, as well as the skin around the site, are not properly developed.

In about 90% of people with Spina Bifida, the alteration of the brain’s development causes hydrocephalus.

Spina Bifida is a ‘Snowflake’ condition, meaning no two people are affected in the same way and the amount of damage to the central nervous system (brain and spine), varies.

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