Going to the skate park with his respite worker was just a fun, every day outing for Embry, age 7.  That is, until Embry caught the eye of TikTok influencer @Jordan.Roy.  Jordan took a video of Embry riding his scooter, doing tricks, falling down and getting back up again.  At the time, Jordan did not know Embry had Smith-Magenis syndrome or had special needs.  He was just charmed by his resilience and big smile, even when he fell.  Jordan made a video of Embry and posted it on TikTok – a video-sharing social network.  In just 4 days the video had over 3.5 million views and 10,000 positive comments.

Embry’s mom, Kayle, who is from Orange County California, said when she first found out about the video that she was upset.  Jordan didn’t have her permission to video her son, and she didn’t know the intention of the video. Once she saw the video and talked to Jordan she was overwhelmed by the positive comments and people reaching out to her asking if they could make “Embry Rocks” shirts, stickers etc.  Madd Gear Action Sports, a global scooter company also reached out to donate Embry his very own scooter (valued at $400) as well as a scooter for his brother, who has autism.  Jordan Roy presented the scooter in another TikTok video to a surprised Embry. Tears filled Embry’s eyes as he received the scooter. You see, the scooter he was riding in the first video had been borrowed. 

Kayle says “I have always worked hard to protect my children with special needs, and always give them their dignity but we can’t ignore the opportunity this has to help raise awareness for SMS”.  She has now harnessed the power of social media and created a TikTok account, @EmbryRocks.  She decided to create an account because it could be a great opportunity to introduce this immense following of people to Embry and Smith-Magenis Syndrome.

Kayle is currently reading up on how to use the app so she can post videos of Embry and help explain Embry’s struggles with SMS, autism & seizures. She feels the education on SMS will bring more attention and more funding for research.

If you would like to follow Embry’s story, follow him on TikTok and Instagram, @EmbryRocks.

Do you have a story about SMS that you want to share with the PRISMS community? Remember, you can share your SMS story with us anytime by filling out our Share Your Story form!