Saturday July 9, 2016
		2009 Run Honouree - Sylvain-Nicholas LeVasseur-Portelance Born July 9, 1996 Every now and then, you meet a kid who grabs your heart strings and gives them a good solid yank. Sylvain-Nicholas LeVasseur-Portelance is one of those kids. He looks like every other 12 years old boy. He has ruffled brown hair, shaded Harry Potter glasses, jeans and a T-shirt. He’s slim, too slim, but then a lot of kids are skinny. Sylvain-Nicholas has SMA Type III and he is passionate about finding a cure and raising awareness for the disease. Run Director, Louise Smith Sylvain-Nicholas by mom, Marie-Anne LeVasseur He was born on July 9, 1996, the third of my four children. Sylvain has 2 older brothers, Mathieu (age 20) and François-Daniel (age 14) and one sister, Marie-Josée (age 10). The pregnancy was a normal one with the exception that it was a spontaneous delivery at 37 weeks. He was so perfect and the most beautiful baby boy. From the day that he was born, Sylvain had tremors in his whole body. After discussing this with his pediatrician, I was advised that these tremors were caused by the pain medication administered during the delivery and not to worry, they would go away on their own. They never did. Sylvain was doing everything a normal baby would do in the first 6 months of his life, but after that, I started to be concerned. The tremors had not gone away and although he never crawled, he was able to roll around on the floor and pull himself up on the side of the couch. He would ‘’couch walk’’, but suddenly his legs would give out and he would come crashing down on the floor for no apparent reason. He started walking between 16-18 months of age but was constantly falling as if someone was tripping him on purpose. When he started to climb the stairs, he would only use one leg, dragging the other. It was very scary to see him trying so hard to climb stairs and all a sudden his little body would just give up and he would tumble down. I took him to see the doctor, and was told, again, not to worry. That the tremors would go away in time and that his left leg was just weaker than the right and that was the direct cause of all his falls. As Sylvain entered pre-school and his falls were getting worse, I went back to my family doctor who referred me to a specialist. Between the ages of three and four, I brought him to nine different specialists, eight of whom told me that Sylvain’s problems were all in my head and that their was nothing wrong with him with the exception of having week legs. It was not until I met Dr. Muniini Mulera, a pediatrician out of Southlake Regional Health Centre, that Sylvain was on his way towards finding a diagnosis. After conducting a few basic tests, including watching Sylvain attempt to walk up a flight of stairs, Dr. Mulera told me that Sylvain did indeed have a problem and that further tests needs to be conducted to pin point the problem. Sylvain was therefore referred to a hospital located in Toronto for follow-up testing. What followed was two years of numerous visits to specialists, testing, including MRI, CAT scan, and EMG. It was a blood DNA test which provided the answer. Sylvain was suffering from SMA Type III. When we finally received the diagnosis, I though most of our problems were over, as treatment and support would surely follow, but that was not the case. I was told to love him and give him a good life. That doctor then proceeded to tell Sylvain that he would never be like all the other boys around him. He would never Run , ride a bike, play soccer or football, and that he would never get better. In fact, he would get worse. They gave me some literature, explained to Sylvain that there was no cure and sent us on our way. I am proud to say that Sylvain was able to ride a BMX bike, he did play soccer and football with friends at school and he learned how to swim. During the first year following the diagnosis, my family was nearly torn apart. Helping pull our family together was a small article about an upcoming event named the Esso Rebecca Run for SMA that was being held in Newmarket, at Fairy Lake Park. In addition, this Run was being held on Sylvain’s 9th birthday. I took Sylvain to the Rebecca Run in 2004 to check things out. This was the first time we saw other people suffering from SMA. Sylvain decided right then and there that he wanted to make a difference so he started focusing on fundraising to find a cure for SMA. It took a long time to get a support team for Sylvain, but it all started with the Rebecca Run for SMA. For the past three years, Sylvain has setup an SMA awareness booth at the Bradford arena on Canada Day with the assistance of his sister Marie-Josée and his brother François-Daniel, to raise awareness and funds for the annual Rebecca Run . The support we received has been tremendous; lots of people became aware about this unknown disease and they were very generous. In fact, Sylvain raised so much money ($1,800- in 2006, $4,300 in 2007 and $2,000 in 2008) that his home town, Bradford West Gwillimbury, presented him with its first ever Youth Civic Award in 2007. He also received the Good Neighbour Award in 2007, for is dedication to helping finding a cure and raising money. Because Sylvain’s birthday is on or around the same day as the Rebecca Run every year, he asked me if he could celebrate his birthday at the Rebecca Run . He invites all his friends and family members to participate every year and asks everyone to donate money to the Run instead of buying him birthday presents. Sylvain has fought that battle all of his life, but his need for speed is to find a cure for the disease that is slowly robbing him of his ability to Run and walk like other kids. In 2007, Sylvain was able to walk the 3KM with the assistance of his AFOs. The walk was hard and painful as the disease had progressed. In 2008, Sylvain was determined to walk the 3KM with is AFOs, even though he now requires the use of a wheelchair on a daily basis. Unfortunately, he was unable to attend because his grandma passed away on Canada Day and the funeral was being held on the same day as the Run . Before dying, his grandma asked him to continue his quest in finding a cure for SMA by raising awareness and to continue to participate to the Rebecca Run . When Sylvain met with Run director Louise Smith to remit the funds he had raised for the 2008 Run , he asked Mrs. Smith to apologize in his name and explain to everyone the reason why he was unable to participate. In his true caring nature, family came first. Sylvain is thrilled to be the 2009 Rebecca Run Honouree and after accepting the post he told Run Director Louise Smith that he has dedicated his life to finding a cure for SMA.