A Message from Megan Cárdenas
mother of Derek, age 9
“Our son Derek has Spinal Muscular Atrophy (SMA type 1). SMA is a genetic condition that results in destruction of motor neuron function. We were told we would be lucky if Derek made it to ten months, as his case was so severe. He stopped moving his legs at two weeks and his arms at three weeks. At five months, he was unable to tolerate feeds by mouth requiring a feeding tube to maintain adequate nutrition and the use of a ventilator to breathe. Derek continues to surpass the odds and is nine and half years old.
While SMA has robbed Derek of physical movement, it has not hindered his cognitive abilities. Derek fully comprehends everything going on around him. Derek communicates by writing on a whiteboard. If someone holds his hand, Derek can move his fingers to direct the person holding the pen. Derek loves to be silly,tell jokes,play board games, perform science experiments, but he likes listening to music and writing songs best.
Derek was a super happy child despite his diagnosis up until the last two years. Recently, Derek has become more aware of his limitations, his condition, and how others perceive him. This newfound awareness brought him into a deep depression where he has and continues to battle suicidal thoughts from time to time. Even though he began to communicate by writing on a whiteboard, Derek held back sharing his feelings. He used to just go to school and only write the word “sad” and cry for a long time in the school psychologist’s office. That was until he was invited to attend Double H Ranch, a camp in upstate NY for medically fragile kids. It was at this camp Derek met Hear Your Song and his life changed. Derek says it best in one of his latest songs: “Love for my family and song/helps me go on.” While Derek has written fun songs about space and camp, he is now finally feeling comfortable to express his true inner feelings and worries through song. This has been super cathartic and crucial for his mental health.
When Derek works with Hear Your Song the time flies. The energy in the room is palpable and the fun is immeasurable. I can only say our sessions with them surpass his Make-a-Wish trip as they are able to reach and inspire my child and make lifelong memories and songs we will always have and be able to play. Derek has had the chance to run a recording session for one of his songs at a professional studio. Through Hear Your Song's new "Duet-A-Doc" program, he's also begun to collaborate with one of his long-term doctors on co-composing a song about their shared experiences of having "butterflies in the stomach."
The times Derek has worked with Hear Your Song have become some of my favorite memories in his whole life. Derek also loves Hear Your Song, as they have helped him to explore and unleash his feelings as well as given him the confidence that he can have a job when he is older as a professional songwriter.”
Our Impact
“Truly, your help and encouragement are such a blessing!
Tearfully, after our daughter spent three months inpatient late last year with a very difficult, painful, and rare disease flare—2021 has been a year of appreciation in our family. We’re thankful to be home together. And healthier. Additionally, we’ve been hoping that Faith’s creativity in song would be a way to process through her experiences (both suffering and overcoming), strengthening her and helping others.
Again, as her parents, we so appreciate your support of her... and, believe me, your encouragement and help mean the world to her! Thank you so much.”
“When you listen to the children talk about the songs they have created, you can hear how proud they are of their work, you can see the confidence in their creativity, and their excitement in having been part of such a remarkable process. Hear Your Song is an incredible organization that touches the hearts of children that are often left behind by their peers. Hear Your Song gives them a space where they are the drivers in a creative process that is totally and completely unique to them”
- Parent, Double H Ranch Camper
“Thank you so much for this amazing opportunity! Charlotte loves using music to express her feelings, and your wonderful team gave her an experience she’ll never forget. We appreciate everything you’ve done. You were a bright spot on her difficult journey.”
“Thank you so much!!!!! We are all in awe of this song!!! J absolutely loves it!!! He was overjoyed hearing his lyrics come alive!!! We are all singing the chorus now!! Wow!!! I think you made J’s year!!! My husband and I love seeing J this happy!! Thank you for all you do! What an amazing gift for kids like J!!”
“A great big thank you for the beautiful song recording you sent J! J has listened to it many times and plays it for anyone who’ll listen, as she is very, very happy with how it turned out. She was thrilled and amazed that something she wrote ‘came to life.’ Thanks again for all your efforts and for bringing campers’ music to life”
“Thank you so much for all the amazing work you have done with our campers. I know that this opportunity has been a highlight for so many campers. I feel so lucky to have you guys as part of Summer 2020 and hope that this relationship can continue!”
“I can’t thank you and your coworkers enough for all the hard work and energy you put into these songs. My students have significant support needs, and music is one of the best ways they connect to the world and to the people around them”
Paintings by patients at Yale-New Haven Children’s Hospital