My family and I have been strong supporters of this cause for many years. We have attended charity gala dinners, helped fundraise and more recently completed a charity climb of Machu Picchu in Peru to raise money to help find a cure for Sanfilippo Syndrome, a deadly, rare, degenerative and terminal genetic disorder that affects children. The founders of this charity, Randall and Elisabeth Linton, are personal friends and neighbours of mine and their youngest daughter Elisa had Sanfilippo Syndrome. When the Linton’s first heard of the Sanfilippo diagnosis, there was no cure, no treatment and no research being conducted.
As a toddler, Elisa was perfectly normal, and full of the zest for life. I first met Elisa at a party in her parents’ back yard. Running and tumbling with my kids and all the other kids, she fit right in. Diagnosed at the age of four with this rare genetic disorder, things started to change for her.
Children with Sanfilippo Syndrome are missing an enzyme that breaks down a complex body sugar called heparin sulfate. This sugar slowly builds in the bones, brain and other organs, ultimately stopping development and causing hyperactivity, sleep disorders, seizures, loss of speech and mobility, mental retardation and dementia. Most children with this disease die in their mid-teens. Through the strength, support and encouragement of her family, Elisa reached the miraculous age of 22, but she succumbed to this terrible disease on Monday October 31, 2016.
The foundation raises money for research with the aim to find a cure for this deadly disease. Clinical trials into a gene therapy, which have proven to reverse the disease in laboratory mice, is currently underway and has been funded by this charity. Other research at Toronto’s Hospital for Sick Children and The University of Victoria in BC is also underway. Apart from my personal connection, I love knowing that 96% of every dollar donated to the SCRF goes directly to research. Your donation will make an impact.
Doctors are very close to finding a cure. The Linton family continues to push on to find a cure for other toddlers stricken with this terrible disease. This charity is worthy of your consideration and support. Please help the Lintons achieve their life's work and find a cure for Sanfilippo.
Learn more about this charity at www.alifeforelisa.org.