Mary was 4 months old when her parents, Ryan and Kate Nelson, suspected something wasn’t quite right with their daughter; she wasn’t bearing weight on her legs nor was she lifting her head like their friends’ babies. Mary’s pediatrician referred them to a neurologist who presumed Mary had a stroke in utero, so he ordered an MRI of the cervical spine, which came back normal.

After, the Nelsons met a geneticist who suspected Mary had spinal muscular atrophy (SMA). A blood test was ordered and two weeks later, the test confirmed the diagnosis. Mary was officially diagnosed at 6 months old on September 11, 2007. Kate was devasted and overwhelmed, as Ryan was away with the military while she was at their stationed home in Ft. Campbell, TN.

Kate received the “typical type 1” diagnosis talk, “go home, love her, and take lots of pictures.” “Don’t you do that with all kids?” Kate questioned. At the time, there was no treatment for SMA, and the Nelsons also had trouble finding doctors who could provide the support and resources Mary needed.

We even had a pulmonologist flat out tells us he would not obtain cough assist, suction, bilevel positive airway pressure (BiPap), pulse oximeter (pulse ox), and other breathing tools,” said Kate.

Finally, the Nelsons found an adult pulmonologist who practiced highly regarded standard of care protocols. With their doctor’s help, the Nelsons were able to form a care team with ICU staff and other specialists to ensure proper in and outpatient treatment for Mary.

From a Google search, Kate and Ryan discovered Cure SMA, then Families of SMA. They contacted the Tennessee Cure SMA chapter president and within days were meeting their first family also affected by SMA.

They taught us so much and their son was such an inspiration,” Kate remembers.

A decade later, the Nelsons are still part of the Cure SMA community and recently attended the 2018 Annual SMA Conference in Dallas, TX.

It was wonderful to have conference basically in our backyard! It’s always nice to meet families, catch up with people you haven’t seen in a while and this year was extremely valuable to meet so many families in the area,” Kate said.

The Annual SMA Conference provides families affected by SMA the opportunity to connect with other individuals and families from all over the country. The conference also includes a variety of workshops, keynote sessions with leading researchers, and more – plus fun events such as our dance party, meet-and-greet, and teen and adult social activities.

Having a conference solely dedicated to SMA is not only beneficial to the caregivers, but to the entire family. Mary really enjoyed meeting and interacting with other kids like her, as well as seeing adults and talking with them about their life,” Kate said.

Interested in learning more about conference? Visit our website and sign up to receive Cure SMA emails for updates on the 2019 Annual SMA Conference, to be held at Disneyland in Anaheim, CA on June 28 – July 1.