Noirin’s Story

On May 27th, 2008 the McGarvey family’s life changed forever. Sonia and her two children, Noirin (4 years old) and Aodan (2 years old) were driving to their grandmother’s house when a car veered across the road and hit them head on, causing a devastating collision.

The car where Noirin was sitting had suffered the worst impact from the crash. Thankfully, the two children had been well secured in the correct child car seats or the outcome could have been worse,” said Sonia.

An ambulance arrived to the scene and both Sonia and Noirin were admitted to the intensive care unit at Letterkenny General Hospital. Later Noirin was transferred to The Royal Victoria Hospital in Belfast. Aodan, fortunately, suffered just a few minor cuts and bruises and was swiftly released from the paediatric ward into his grandmother’s arms.

Doctors soon discovered that Noirin had a T1 complete spinal injury. “The surgeon told us that Noirin’s spine was completely severed. She is paralysed from the chest down but thankfully she has great use of her hands.”

Sonia spent two weeks in Letterkenny Hospital following the accident and during this time the responsibility fell on her husband to break the news of the extent of the injury to Noirin. The hospital provided him with a child psychologist who was instrumental in guiding the way through the process.

“Noirin may have been just four but she fully understood what she was being told. She cried out and asked a lot of questions. She had just started ballet classes and she was fully aware that ballet would no longer be an option for her.”

Noirin spent two months in the Royal Victoria hospital and then transferred to Stoke Mandeville Hospital in Aylesbury, Buckinghamshire where she spent two months being rehabilitated. The McGarveys found the hospital a vital point of contact where they received invaluable advice on Noirin’s condition. When the family returned home they were visited by a counsellor for families with special needs ending list of essential forms.

Sonia says: “I’m an occupational therapist with some experience in this incredibly overwhelming. Apart from Noirin and us having to come to terms with her paralysis, there was a huge amount of red tape and changes to be made. We had to make adaptations to our house to make it wheelchair friendly and we also had to contact the school where she was due to start and it also had to make changes. The principal and staff were very supportive and the necessary adaptations were made there also.”

The local community carried out two rounds of fund raising and the money garnered from the process has helped the family pay for building works and other expenses associated with Noirin’s condition.

“Apart from basic adaptations such as resurfacing the ground around our house port so she could go from the car to the house without getting wet. We installed a gym and a hydro-pool which has jets that she swims against. She uses this once a week because she is very susceptible to urinary tract infections when she uses a public pool.”

The McGarveys were delighted when Noirin reached her goal of joining junior infants just weeks after leaving Stoke Mandeville. “Thankfully she had spent the previous two years at the Naionra group of friends established already in the class. They rallied around her so much and still do today. In fact, Noirin has, on occasion, told me that she wishes they would treat her just like one of the gang instead of fussing over her so much. She just wants to blend in. However, it’s not a bad complaint. Her friends have been wonderful,” Sonia says.

The local ballet teacher, who is the mother of one of Norin’s friends, encouraged her to return to ballet class after she left Stoke Mandeville. Noirin joined the class in her wheelchair and was taught how to use her arms and move them to the music. Noirin remained in the class until recently. “She didn’t give it up because of her paralysis; she just lost interest in it.”

Noirin’s greatest passion is horse riding. She rides once a week, often on the beach. She recently learned how to trot and has progressed from needing two people to support her to just one person who stays close by but doesn’t actually hold her.

When she first began, a special saddle was made for her but now she rides bare back and holds onto a strap that crosses around the horse’s torso.

After developing some unusual symptoms, such as pins and needles in her hands, Noirin was brought to Stoke Mandeville with queried Syringomyelia, a cyst that forms in the spinal cord.

Sonia and her husband decided to get a second opinion from Shriners Children’s Hospital in Philadelphia which specialises in spinal cord injuries. The doctors at Shriners discovered her symptoms were related to her original injury and were able to treat the problem within a week. They also noticed that she had scoliosis (curvature of the spine) and they made a back brace so as to delay further progression. “The treatment we received at Shriners was invaluable and we are
returning there at Easter.

We also recently travelled to a clinic in Baltimore for restorative therapy where they recommended the Functional Electrical Stimulation (FES) bike. The bike helps to maintain muscle bulk and reduce spasm. Although it didn’t make a massive difference to her, we learned what the best therapy is for her and received a very good home program.”

“We bought a Functional Electrical Stimulation bike which we try to use twice a week. Like any child, there are times where she just wants to stop and do normal things.”

Aodan is now five years old and resents the time his mother and sister spend away from the home when they are travelling abroad. “I’m very conscious of his needs and I try to limit the amount of time spent away from the family home. I don’t want to treat him unfairly.”

The family was given access to a child psychologist after returning from the hospital but never felt the need to call on his services until recently. Last Christmas, Noirin broke her leg and developed pneumonia. “She has her moments when she feels that life has been unfair to her. There’s usually a trigger, like an illness, and then she asks the necessary questions before moving on. However, this time around the low moments went on for a little longer, so she has started seeing the child psychologist and enjoys the sessions which largely revolve around play.”

Noirin has recently started Spanish classes, takes keyboard classes and found a love of art.

Sonia feels it is worth stressing that parents are also put in the role of being care co-ordinators, nurses and therapists and it leaves very little time to be just mammy or daddy. If services were more streamlined with the necessary professions and investigations all under one roof, with a co-ordinator of care and regular review instead of crisis care, things would be a lot easier.

Sonia is now working hard to promote awareness and raise funds for umbilical stem cell research, particularly the work done by Dr Wise Young, who has driven the research for the past two decades. “SCI Network USA is raising funds for stem cell research through its organisation”