Ava and Hailey are two of the strongest little girls you will meet. They are happy, smart and beautiful and will inevitably brighten up your day if you’re lucky enough to spend time with them. Both have been diagnosed with Spinal Muscular Atrophy Type 1, the most severe form of this genetic disease.
We are very lucky that both Ava and Hailey were born in a time when there are three FDA approved treatments available to fight their diagnosis. While there is no cure yet, these treatments will help Ava & Hailey pass the average life expectancy for this disease and lead a fulfilled life.
Ava and Hailey have both come so far since our last golf outing! Ava is in first grade now and is very open to discussing her diagnosis and abilities with peers. She is still working hard at her therapies and making minor physical strides constantly. She is attending feeding therapy to strengthen her swallow muscles so hopefully she can begin eating by mouth instead of her g-tube over time. She is swimming in aqua therapy and playing power soccer on the weekends.
Hailey is coming into herself as well! Last year she was unable to navigate stairs by herself but this year with the help of the railing she is able to climb up and down. Hailey recently received an Amtryke adaptive bicycle and is looking forward to cruising around this summer with her cousins and friends. In spring, she plays in a specialized soccer program for children with disabilities. She’s doing more things independently and likes to help Ava with tasks her sister is unable to complete – such as picking dropped toys off the floor or reaching low drawers.
Both girls have worked so hard this year. Daily tasks that seem mundane for others their age are not easy for them, but they wear a brave face and push through the obstacles presented. We are so lucky Ava & Hailey have the opportunities to thrive thanks to the hard work of Cure SMA and the community that supports them, however our work is not done. Join us today to ensure Ava, Hailey and everyone with SMA can live the life they deserve.
