Our Story

Hazel & Hadley were born at 32 weeks and were in the hospital for 3 months after they were born. The girls were hitting some milestones but after a while started to lose them. At this point we thought it was prematurity so we stared physical therapy and that's when they told us we needed to see a neurologist. The neurologist that we had seen was very involved within the SMA community and knew right away that it was SMA, but we couldn't do anything until we got the genetic testing results back. We got the results back and they were officially diagnosed with SMA Type 2. They were treated and dosed with a gene therapy called Zolgensma at 15 months.  

About SMA

Spinal Muscular Atrophy (SMA) is a rare genetic disorder that affects the motor neurons. SMA is caused by a mutation in the SMN1 gene. This gene is responsible for producing the SMN protein, which is essential for the health and function of the motor neurons. Most people have a back up gene called SMN2, but it does not produce enough SMN protein. The number of SMN2 copies a person has can affect the severity of the disease. People with SMA need extra support like physical therapy, breathing help or a wheelchair.

Learn More at CureSMA.org

Our Treatments

Although Spinal Muscular Atrophy (SMA) is a rare disease they have many treatment options. Hazel & Hadley were dosed with a one time gene therapy called Zolgensma at 15 months old, Zolgensma uses a viral vector to deliver a functional copy of the SMN1 gene into the motor neurons. Another they take is called Evrysdi, Evrysdi enhances the SMN2 genes ability to produce more of the SMN protein, helping to improve motor function. These treatments have helped stop the progression of SMA and with the help of supportive care like physical and occupational therapy we are hopeful one day that the girls will be able to walk.

Your generous donations allow for the opportunity to attend intensive therapy sessions and provide much needed equipment that insurance does not cover.

Donate