MEET AVA AND HAILEY 

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 started Kindergarten and absolutely loves learning and spending time with her new friends. She has a nurse with her throughout the school day but has gained enough strength through physical therapy and treatments to wheel herself independently throughout the classroom at the Rutherford Kindergarten Center. Ava is attending feeding and swallow therapy so hopefully she can begin eating by mouth instead of her g-tube over time. She is active in her Girl Scout Troop and just recently began Aqua Therapy.

Hailey is making huge strides as well! She is walking completely independently and is working hard at physical and occupational therapy to increase endurance and master new goals such as going up and down stairs. She loves playing with her friends at Children’s Studio and all of her family around Rutherford.

Both girls have worked so hard this year. While daily tasks are not easy for them because of their diagnosis 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.