31 Days of SMA: Having Such a Tightknit Community Makes All the Difference

Céline and Amber-Joi. (Photo courtesy of Amber-Joi Watkins)

Day 14 of 31

This is Amber Joi-Watkins’s story:

My daughter, Céline, was diagnosed with SMA type 1 in December 2018, when she was 6 months old. My only focus at the time was to get her treated as soon as possible.

I was told about various resources like Cure SMA and the Muscular Dystrophy Association during the conversation, but that information was too much to comprehend at such a delicate time. We were subsequently invited to the 2019 Cure SMA Conference under the newly diagnosed scholarship program, but we declined. It wasn’t within our capacity that year.

By the time the 2020 conference rolled around, our outlook was much different. As a family, we had come to accept and better understand Céline’s diagnosis. Céline had received medical treatment, and we had our physical and occupational therapy routines down to a science. My family was adjusted to life with SMA, and we were able to take on more. Cure SMA kept in touch with us, and the SMA community became an integral part of our lives. We signed up for the 2020 conference, but the next two years were virtual due to COVID-19.

Finally, it was announced that the 2022 conference would be happening in person in Anaheim, California. The conference turned out to be everything that I did not know we needed.

I have been in touch with so many families and individuals affected by SMA virtually. It is a bond that is indescribable. However, the power of seeing these same people in the flesh is unmatched. I also felt immediately connected to people I had never even seen before. I felt a special sense of pride in the SMA community and the way in which we are empowered together.

Between the conference activities and the theme park, we had zero down time. We were jet-lagged, without structure, and just going with the flow — and we had the time of our lives. For the first time since Céline’s diagnosis, we didn’t do any physical therapy or follow a strict diet or sleep regimen for an entire week straight. That is exactly what we needed. We needed the break from the work that goes along with SMA, we needed the bonding time, and we needed the physical connection to the SMA community. I am so grateful for this conference and can’t wait for 2023.

SMA News Today’s 31 Days of SMA campaign will publish one story per day for SMA Awareness Month in August. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofSMA, or read the full series.