Community Spotlight: Shaakira Thomas and Family

Every August, the spinal muscular atrophy (SMA) community unites, raises awareness, and shows our pride for SMA Awareness Month. This year, Shaakira Thomas and her family chose to go above and beyond by organizing landmark lightings all over the country, all in support Cure SMA’s newborn screening initiatives.

Shaakira and her husband, Parris Sr., are parents to Aaliyah, Kassian, and 4-year-old Parris Jr., who was diagnosed with SMA a couple of years ago. Shaakira and Parris Sr. first noticed something wrong when Parris Jr. started walking around the age of 1 year. “He had a little wobble, and it took until just before his 3rd birthday for us to get a diagnosis of SMA,” shared Shaakira. It was also tough to learn that their son could have been diagnosed earlier, and started on treatment right away, if the state of Alabama had screened newborns for SMA at birth. This is sadly still the case, despite 36 states having implemented SMA screening.

The Thomas family understands first-hand the importance of raising awareness for a rare disability like SMA. “Parris uses a wheelchair. If doctors and our family were aware of SMA, he may have been able to receive treatment sooner, which could have helped stopped the progression from getting to that point,” stated Shaakira.

Shaakira had to leave her job with USPS because of all the medical appointments they have for Parris. “I believe that was the best thing that could have happened for Parris. It opened up more opportunities for him with therapy and allowed for us to do more with him,” shared Shaakira. Despite the challenges, Shaakira believes that SMA has made her family stronger and each of them have become better people because of it.

In 2021, the Thomas family decided to give back. Shaakira has dedicated a considerable amount of her free time to researching buildings that do awareness lightings and filling out forms to ensure major landmarks in different cities across the U.S. light up on August 14. “To me, SMA Awareness Month is not only about ways of raising awareness, but it is also a time to honor and celebrate everyone impacted by SMA. We are all fighters and being able to hear everyone’s stories is amazing. It brings me hope and strength,” shared Shaakira.

More Information About Lightings:

What are awareness lightings?

Awareness lightings at popular landmarks such as buildings, highway bridges, and entertainment venues help to bring attention to the SMA and SMA Awareness Month in a unique way. Many of these locations will share on their social media. The Cure SMA colors are used to represent the entire SMA community and all the hard work and efforts that are put in towards research, care, and support all year long.

How can I get I arrange an awareness lighting in my area?

Contact Kaity at [email protected] for support on getting started.

Where are the SMA Awareness Month lightings occurring?

Click here to view all scheduled lightings listed below are taking place on Saturday, August 14, unless another date is specifically listed. The great thing is that SMA awareness can be done anytime, so give it a shot.

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