Caitlin Kernaghan

Age: 11
Country: Canada
Year of diagnosis: 2005

"My name is Caitlin, I am 11 years old and I have had MS since I was seven. Sometimes I get scared that I will lose my eyesight or get sick and not be able to walk and I will have to go to the hospital.

I have to get a needle every second day that some times hurts but it helps me not get sick. Most times my life is pretty normal and I get to do normal things.

Our family and friends have walked in the MS-walk-a-thon the last four years and our team 'Caitlin's Crusaders' has raised over CAN$23,000 for MS to HOPEfully
find a cure for MS in my lifetime.

I tell my story to other people because I HOPE they would like to donate for research so that we can find a cure and that no other kids or adults will have to spend their whole life with MS."

Caitlin's Story

When Caitlin was seven, she started getting bad headaches. In November 2003, she had an excruciating one and her paediatrician sent her to Joseph Brant Memorial Hospital in Burlington. A CAT scan didn't show anything was amiss. Two days later, she started having leg and arm tremors, achiness and lost control of her bladder. She was sent to The Hospital for Sick Children (Sick Kids) in Toronto.

The next day, an MRI showed Caitlin had a lesion on her brain and spinal cord. "She couldn’t stand, she couldn't move her neck. This girl was so sick, she was standing all slumped to one side," Terri remembers.

Doctors thought Caitlin had acute disseminated myoencephalitis (ADEM), which is an autoimmune attack affecting the brain and spinal cord. It produces similar symptoms to MS but is acute, not chronic, and usually has a positive outcome. After nine days in the hospital, Caitlin came home with a prescription for steroid drugs.

"On December 27, she had blurry vision and then lost her eyesight in both eyes," Terri said. "That's when they said she may have MS." Another MRI showed lesions on Caitlin's optic nerve, the middle of her brain and her brain stem. A follow-up MRI in April 2004 was clear and Caitlin had no symptoms until almost a year later.

In February 2005, Caitlin was playing with her Barbies in her bedroom when she could tell something was wrong. When she got downstairs, her mouth was slack, her arm was numb and she couldn’t move a muscle.

When her parents took her to the hospital for an MRI, her whole right side was weak. About two weeks later, she lost eyesight in her left eye. Caitlin was diagnosed with multiple sclerosis when she was eight years old.

In August 2005 Caitlin had an attack and she couldn't move from her neck down and was losing her balance. She spent five days in the hospital.

Shortly after that, Caitlin ran in a school cross country meet. "She has no limitations," Terri said. "When she gets sick, it's very bad, but she is very good otherwise."

Caitlin is just like every other kid. Except every other day her mother, Terri, gives her a shot of betaseron. Caitlin does have provisions in place at school, just in case, like materials with larger print or extra time for assignments if she is feeling fatigued.

Terri and her husband Paul share all they know about MS with Caitlin. "She has met our friend's sister who has MS, who is in a wheelchair. Caitlin knows this can happen to her and she knows if her eyes keep getting damaged, she may not see," Terri said. "We tell her everything. We don't want her to wonder. We don’t want her to live in a bubble or be in denial. We're very proud of her and what she has to go through. It's nothing to be ashamed of; we are doing what we can."

Dr Brenda Banwell, Director of the Paediatric Multiple Sclerosis Clinic at Sick Kids, said reports of children with MS symptoms date back to the 1920s, but widespread recognition has come in the last decade.

When the clinic at Sick Kids opened in 1999, Dr Banwell expected 5-10 patients each year, in 2005 they had 48. She says 30-40 children in Canada are diagnosed with MS every year, and she believes this is an underestimation. "I don’t know if it's because MS is becoming that much more common or if it's because we are so much better at recognizing this. I suspect it's a bit of both. Kids like Caitlin are an enormous help in letting people know. Most of my patients are very active in their communities and get the word out," said Dr Banwell. "What they do is better than having something published in a scientific journal sometimes, because awareness is critical."

Caitlin’s Profile was adapted from the article 'Multiple Sclerosis not just an adult's disease' written by Abigail Cukier (Stoney Creek News, March 17, 2006)

MSIF would like to thank Caitlin and her family for sharing their story and the MS Society of Canada for their support with this project.