This passage is from an article in The Globe and Mail. It is written by Jessica Mason, whose sister, Elisa, passed away due to Sanfilippo Syndrome.
My sister Elisa was in a hurry to come into this world. My dad ran two red lights getting her to the hospital because my mom was already in the late stages of labour.
Woogie (a nickname my brother, Connor, and I gave Elisa) was exceptionally confident as a child. When people came to visit, she would grab their jackets and shoes, throw them into the closet, take their hands and walk them in. And she would let you know when it was time to go. She’d grab your jacket and shoes, hand them to you and say, “You go now.”
By Elisa’s third birthday my parents, Randall and Elisabeth, knew something wasn’t right because her vocabulary lagged behind other children. Doctors thought it was “third child syndrome,” however, after months of speech therapy, they investigated further. In June, 1998, my parents were told by a physician at SickKids hospital that Elisa had a very rare disease called Sanfilippo syndrome. She would stop developing and slowly regress, losing her speech and mobility, and would eventually succumb to the disease in her mid-teens. He offered no hope because there was no money for medical research.
My parents were devastated by this news, but refused to be passive about the prognosis. Within a year they established The Sanfilippo Children’s Research Foundation, eventually raising more than $7.5-million and fully investing it in medical research.
Leaving home to attend university was especially hard because I only saw Elisa on monthly visits. Each time I returned home, I noticed new signs of regression in my beautiful sister.
This past summer, Elisa developed pneumonia and spent nine weeks in the ICU. Doctors and nurses worked to relieve her congestion and try to make her comfortable. I had one wish: that they could help Woogie live to be a bridesmaid in my September wedding. You can imagine the joy I felt when my brother brought Elisa into the church that day.
Six weeks later, at the age of 22, Elisa passed away early in the morning on one of her favourite days of the year: Halloween. That morning the sun bathed her bedroom with glorious rays of light, as if she was there beside us giving us warmth, making sure we were okay.
People say you’re never the same after a loved one leaves you. To be honest, I don’t want to be the same. I am different. Elisa left an imprint on me, and many others, that will never be removed. I am a better person because I knew and loved my sister.
One of the research labs sponsored by the Sanfilippo Children’s Research Foundation in Columbus, Ohio, is now conducting clinical trials on a ground-breaking gene therapy treatment to help Sanfilippo children. So far, the results are positive and encouraging. It is Elisa’s legacy: Our world is a better place because she briefly visited it.
I always knew that without a cure, my sister’s time with us would be limited. And with this inevitable loss of my sweet Blair, there would be a funeral. While our family always aimed to think positively about Blair’s illness, this is the only detail about the end of her life that came to my mind often in the years before her passing. Read More