A Little Girl Couldn’t Speak. So We Listened

I recently took part in a webinar hosted by Developmental Disabilities Nursing Association. The title, Unspoken Symphony, intrigued me. I am a musician and as a HCQU nurse working for many years with individuals with intellectual and developmental disabilities, I’m all ears.  

After the usual housekeeping information, we were introduced to a family by way of a recorded video.  Their daughter Riley, who is 15, is diagnosed with Lennox Gastaut syndrome and Tuberous Sclerosis complex. She is unable to communicate in a traditional manner. For those not familiar with these two conditions, Lennox Gastaut syndrome is a severe form of childhood epilepsy with multiple types of seizures.  These can be very difficult to control even with the use of multiple seizure medications. The National Institute on Health defines Tuberous Sclerosis complex as a rare, multi-system genetic disease that causes non-cancerous (benign) tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin. It usually affects the central nervous system and can result in a combination of symptoms including seizures, impaired intellectual development, autism, behavioral problems, skin abnormalities, and kidney disease.

Through the video you can see the family’s love for Riley and the desire to connect with her. They openly speak of the challenges in communicating with her and the use of art as a medium to allow her to express herself. In the video Riley’s father states “It’s not easy getting to know someone who can’t talk. You slow down. It makes you appreciate the little things.” The company responded by being inspired by his words and the idea for unspoken symphony was born. Watch the video here: unspokensymphony.com/see-our-story.

Greenwich Biosciences is responsible for developing this software that allowed a musical score to be put to the artwork that Riley and others have created. It was built with image recognition technology that analyzes the submitted artwork and then converts it into a unique melody. The software places a music staff over the artwork and then plots points over lines that intersect. It generates a video that shows the notes as they are placed on the artwork and plays the melody. When it is complete, if the artist chooses to, they can submit their masterpiece to the Unspoken Symphony art gallery on their website, or they can just play the melody.  They are then sent a copy of the video in mp4 format and the sheet music to be kept or shared.  There is no cost for this service.

“Unspoken symphony was created for all those who struggle to express themselves verbally. Inspired by a little girl who can’t speak, it transforms artwork into an original melody, giving the world a chance to communicate and connect with loved ones like never before.”

You may also recognize the company Greenwich Biosciences, as they are known for their research and delivery of the FDA approved cannabinoid prescription medicines including Epidiolex.  They tout “Our Promise” as “We’ve achieved this distinction because we made a promise to our patients and caregivers to look at things differently.“

Learn more at unspokensymphony.com.