Children with Sanfilippo syndrome are missing an essential enzyme that breaks down sugars, resulting in a build-up of them in the brain and other organs, ultimately stopping development and causing hyperactivity, sleep disorders, seizures, loss of speech & mobilty, mental retardation, and dementia. Most children do not live to adulthood.
Instead of succumbing to the disease however, Elisa’s parents Randall and Elisabeth chose the road less traveled and began a foundation to share the story of their daughter, spread awareness about Sanfilippo syndrome and connect families with Sanfilippo children from around the world. Click on "The Tale of Elisa Lou Who" on video page to learn more about their journey.
Entitled “A Life For Elisa” the ultimate goal of the foundation is to raise money to fundresearch and hopefully find a cure in Elisa's life time – it is a daily crusade that the Linton family willingly charts. Siblings Jessica and Connor, along with their parents, have devoted their lives to helping Elisa and bringing hope to every family who has a child afflicted with Sanfilippo syndrome. Their community of friends, medical specialists and local businesses have all joined in, surrounding this family with love, prayers, financial support, and volunteering in special ways, helping to raise over $8 million for research since 1999 with a remarkable 96% of every dollar donated being committed to research. While Sanfilippo occurs once in 24,000 births, successful research into the disease could apply directly to related genetic conditions that affects 1 child in 5,000.
The Linton family members and the SCRF have been honoured with the following awards and recognitions because of the leadership, dedication and courage they have shown:
Canadian MPS Society "Rare Heros" Award, 2018
Global Genes "RARE Champion of Hope"- International Advocacy, 2016
Flare Magazine's Volunteer of the Year Award, 2002
Elisa began to regress at six years old and for years struggled just to make sounds, eat and was totally confined to a wheelchair until she passed away Oct. 31, 2016. But like the symbol for the foundation – a rose – Elisa’s bright eyes and brilliant smile communicate a vibrant beauty within. It is this beauty and her spirit that inspired the Linton family to continue on their journey and keep her legacy of HOPE alive for other affected children and their families.
Hope is on the horizon as research is making great strides through our funding that wouldn't happen without your support. Thank you for partnering with us.