From Founder and Executive Director Helena Liedtke
The mission and goals of Space2Thrive originate in my experience parenting my daughters Vivienne following her diagnosis of SMA Type 2 at the age of twenty-one months and her younger sister Lara, who has been born carrying the disease, but doesn’t show expression.
“SMA (spinal muscular atrophy) is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants. SMA affects approximately 1 in 10,000 babies, and about 1 in every 50 Americans is a genetic carrier. SMA can affect any race or gender.”
SMA leaves our daughter with very low muscle tone and bound to a wheelchair to say the least.
After our daughter received her 1st powered Wheelchair at age 2.5yr, my husband and I put up ramps on each side of a landing dividing our home and containing our daughter to one room only. The next morning we surprised her, her response was overwhelming.
By spinning her wheelchair in circles before she took on the obstacle she exclaimed joyfully “Mommy, Daddy, you build a bridge for me. I am so happy now”. Then, aiming for the narrow passage she flew over the bridge to more inclusion and freedom. (She kept on going back and forth for a long time taking in the experience.)
Ever since my daughter’s expression – offering ropes of confidence and building bridges – became my passion, my purpose, my MISSION.
My insights as a caregiver and by learning from other parents and professionals over the past years led to a shift in my professional and private priorities and goals. I became aware of the great need for improvement in many areas from support to specific services families and communities are lacking.
My goal is to reach out, educate, empower and inspire families, communities, organizations and corporations in matters of diversity, inclusion, awareness and decision making. My goal is to fill the gaps and BUILD BRIDGES.