“I SIMPLY couldn’t live without them”.
That’s the testimony of one local mum who described the important role a local parents’ support group for children with Spina Bifida plays in her life.
Elaine Doherty from Magherafelt’s four-year-old daughter Emma Getty was born with Spina Bifida, and when she was just a few days old Shine came into their lives.
A UK-wide charity, Shine has had a presence in Northern Ireland for a number of years but only recently set up a local support group in the south Derry area.
The practical assistance as well as guidance and support provided by Shine is something that has been crucial in Emma’s life says Elaine.
“I couldn’t live without the group,” she told the Mail. “I would call the group before I would call a nurse or doctor.”
Spina Bifida, and the associated condition hydrocephalus, affects a person’s spinal development and can result in problems with mobility, bowel and bladder, and some brain functions.
Shine aims to support parents and their children faced with the birth defect and all its symptoms.
Elaine, a mum-of-four, had experience of the condition having had a sister suffer from it and die just a few days after birth.
She said she was not shocked when Emma was born with it, having been sent for a 4D scan ahead of the birth to check out an abnormality noticed by a doctor.
“I was told at that stage that the baby was fine, but I felt there was something wrong,” she said. “When Emma was born I wasn’t surprised that she had Spina Bifida. It didn’t come as a shock and therefore didn’t concern me too much. I loved her just the same.
“My main worry was whether she would be able to walk.”
Now aged four, and looking forward to joining Holy Family PS this September, Emma is able to walk as best she can.
“She gets tired,” explained Elaine. “Her leg muscles are weak, she gets physio. But she likes to walk when she can and we’re happy with that. She knows when she is tired and can’t walk herself.”
Elaine’s family is no stranger to tragedy. Following the loss of her sister, Elaine’s brother died in a car crash a number of years ago, but she remains resolute.
“You have to get on with things,” said Elaine. “Yes it is hard, but if Emma requires hospital appointments, we will get her there, and if she needs special treatment she will get that.”
Things like educational needs become an issue as Emma gets older, explained Elaine, who is full of praise for the help of staff at Fairhill Nursery in Magherafelt.
“The staff there were just great,” she said. “They went above and beyond for Emma and we really appreciated that.”
Emma will need educational assessment to ensure she is provided with the appropriate and adequate education to suit her needs at school. This is where Shine really come into their own, Elaine said.
“It could take around eight or nine staff to sort Emma’s education. From occupational therapists, to physios to speech therapists. So handling all that can be overwhelming.
“Shine staff are there at the other end of the phone when you need them. I can phone them for advice on Emma’s statement and rely on them to help me out.”
It’s practical advice such as this that attracted Michelle Blair to the group too. Her two-and-a-half year-old daughter Millie also has Spina Bifida, just one condition as part of the Sodium Valproate Syndrome she was born with.
Michelle, who has suffered from epilepsy since she was a teen, was on medication throughout her pregnancy which is thought to have contributed to Millie’s condition.
“We had no idea there was anything wrong,” said Michelle who lives in Draperstown with her husband Aaron. “We were totally shocked when Millie was born and we were told there were serious problems.
“It was a horrendous time - Millie spent most of her first year in hospital.”
Trips to and from the Royal Hospital for Sick Children in Belfast became a regular thing for Michelle and Aaron, as they visited their only child to make sure she was ok.
Since then Millie, who has learning difficulties, has had operations to mend a hole in her heart, and may face further surgery on her head to correct an abnormality that could affect brain growth.
It has been a tough road, said Michelle, but the support and advice from those around her, including Shine have helped the family get through.
“It really has been a difficult time,” said Michelle. “But we’ve just had to get on with things and I hope Millie is through the worst of it and we’re coming out the other side. She has been through more in her short years than most of us have in a lifetime.
“It’s been great to be part of the group (Shine) and to meet other parents in similar situations. You see them with their children, who are maybe older than Millie, and that allows you to look at what they have achieved. It gives you some hope for what Millie can achieve and how she will progress.”
Cathy McKillop, director of Shine in Northern Ireland, said the Mid Ulster group has progressed well since its formation in December last year, but added that funding is always a major issue.
“In the group the numbers are quite small - across Northern Ireland there are 800 members - but growing and hopefully we can raise awareness about it.
“We currently receive funding from the Big Lottery and that pays for the group at the minute but the bulk of our funding comes from fundraising.
“We really appreciate all the local fundraising that takes place - allowing us to take trips like the one to the donkey sanctuary in Templepatrick a few weeks ago. Without fundraising trips like that can’t happen, and we would appeal to anyone who can contribute to do so, and we are always welcoming of new members.”
On October 25 the group is inviting everyone to support World Spina Bifida Day by wearing yellow and texting WEAR33 to 70070 to donate between £1 and £10.
For more information about the group contact Cathy McKillop on 01733 555988 or email firstname.lastname@example.org.