What can be hard to discuss can sometimes be portrayed more easily in song, and that’s exactly what one Philadelphia mom discovered while working on the music video, ‘Spaces.’
The song and music video was not made just for entertainment — ‘Spaces’ aims to amplify the voices of the spinal muscular atrophy (SMA) community and spark important dialogue about disability representation. The project was sponsored by Genentech as part of the company’s commitment to the SMA community and is now available to view online.
What is the SMA community? Spinal muscular atrophy is an inherited disease that affects nerves and muscles, causing muscles to become increasingly weak. What ‘Spaces’ tries to do is answer any questions about the community and bring awareness to those who not only want to survive this obstacle, but live their lives to the fullest.
For local mom Amber-Joi Watkins, information about the SMA community came as a necessity when she learned her daughter Céline Domalsk (now 3) was diagnosed with spinal muscular atrophy, SMA type 1, at 6 months old.
“I was in a panic, I had never even heard of SMA,” Watkins explains.
Everything in those initial moments learning her daughter had SMA were scary for the new mom. From doctors telling her that Céline might not ever be able to walk on her own, swallow on her own or through searching Google and finding article after article citing challenging and fatal outcomes, it was disheartening. It’s the leading genetic cause of death in infants, and doctors said it affects every one out of 10,000 babies. Connecting with parents is what initially changed the tune and also what kickstarted Amber-Joi’s involvement with the music video and song in the first place.
“I went on social media and initially connected through other parents going through the same thing—no two cases are the same—but we linked up. I needed someone to talk too, and by doing that I was put in touch with different online communities for people like myself who are in the SMA community,” Watkins explains.
Now, Céline can walk, she can swim and she can be more independent than doctors anticipated. Her treatment is daily, but incorporates physical therapy, occupational therapy and she has been given special permission to be put on a drug that is now FDA approved.
“I rarely see her get frustrated…If she can’t do something she works around it, and that’s something that I’ve seen her doing her whole life,” Watkins says of her daughter. “In the beginning, and the reason why I continue to advocate and spread awareness, when Céline was first diagnosed I really needed the community. I needed someone to talk too, I needed the support and I found so many helpful families and resources. I found it so helpful to talk to other moms. I kind of just now try to pay it forward and I’m pretty happy with the outcomes that we’re having. I’m pretty comfortable in my situation, but I remember getting that diagnosis and looking online.”
It’s that thought of the initial scare and the spiral of articles showcasing medical necessity and even death that still drives Watkins to get the word out there about the disease, which was once a death sentence for most but now has many options.
“In retrospect our story is different. I’m not trying to take away anything from the patients in the past or the history of the disease, but I do want parents to know that there are options and when you get that diagnosis it’s natural to look online and say what does my child’s future look like? I like to offer that picture of Céline, my daughter to show this is what SMA looks like today…That’s what drives me,” she explains.
Through the network of parents she met and organizations such as the Muscular Dystrophy Association, a nonprofit dedicated to abnormal muscular diseases, Watkins was able to join in on a collaborative effort of parents and a Grammy-nominated producer to produce the music video and song, underwritten by Genentech. Released on Nov. 9, this project also is timely with November being National Family Caregivers Month.
“We wanted people to understand certain things in the SMA community through song,” continues Watkins. Some key points were discussed in collaboration with ‘Spaces,’ performed by James Ian, a musician who lives with SMA 3 himself. Those points involved ideas, words and emotions that they wanted the song to evoke and the song was created from that session.
“My place and part in the music video is going through our everyday life with SMA. I think in this day and age where people are so attached to social media and just media in general, it’s effective to have visuals when you’re telling a story. As for the song, we all have a love of music, so even though the song is for the SMA community, we wanted it to be something that everybody could connect too and understand and we felt that music was the most powerful way to do that,” explains Watkins. “People might feel like we’re invisible or ignored, so we want to create a presence and let people know that we’re here and in the world and we’re doing great things even with disabilities or being the mom of a disabled child. Just letting our presence be known and letting people know that living with SMA or being a caretaker of someone with SMA, it can be done and you can still have an amazing life and contribute to the world in a great way despite a disability.”
‘Spaces’ is now available to stream live on Youtube, and it’s effects will speak for themselves through the words and visuals.
“You’ll see all different types of ways that SMA has affected [people,]” finishes Watkins. “We’re proud of our story.”
Check out ‘Spaces‘ on You Tube. For information about SMA, visit gene.com
