From Jessica Bogacik, a music therapist at Nationwide Children’s Hospital Hospice and Home Based Palliative Care funded by Sam’s Fans, read this music therapy impact story:
“Kiyana is a 9 year old who has a condition called Spinal Muscular Atrophy (SMA), which impacts the use of her voluntary muscles. Kiyana was born with Type 1 SMA, which is the most severe form of the disease. She is dependent on a tracheostomy and a ventilator to help her breathe, as well as a feeding tube to help her maintain her growth and nutrition. Kiyana has very little use of any of the muscles in her body, including her head/neck, arms/hands, legs/feet. Kiyana is dependent on a wheelchair, and requires total care 24 hours per day.
But, this description of Kiyana’s disease doesn’t come anywhere near giving a full picture of her. Kiyana is a bright, happy, and smart young lady. Her friendship is given generously, and her personality shines so brightly through her challenges. She has impeccable musical and comedic timing, and she is very curious. She also knows what she wants, and knows how to ask for it.
In my music therapy sessions with Kiyana, she sings proudly, makes up words to songs, and dances excitedly with her eyebrows. Kiyana is also blessed with a family who loves her deeply, and works tirelessly to make sure her life is the best it can be. I had the pleasure of sitting down with Kiyana and her parents recently to ask them about their impressions of music therapy.
Here’s what they had to say!
‘We’ve had music therapy [in our home] for about three years now. We had seen some music therapists in the hospital before. Having music therapy in our home makes Kiyana feel more safe and comfortable. She loves having music therapy in the hospital, too, but when she’s there, it’s because she is sick, and she may not feel up to participating as much. At home, she can enjoy music therapy more.
Kiyana loves to be able to join in on any activity. She loves to sing! She loves to make up songs, and to hear her own voice on recordings. It gives her a sense of pride that she’s doing something to contribute, and she can hear the end result of it. She’s very artistic.
Kiyana really loves the instruments that Jessica brings. We really like it because she is able to express herself with music. It’s freeing for her. We’ve been exposed to instruments we never would have known, like a rain stick, or an ocean drum. Music therapists have introduced us to different instruments. It’s pretty cool to learn how they work and what they sound like.
Music therapy is a complete success!’
Kiyana then told me that her favorite instrument is the guitar, and she also loves the tambourine.
Right now we’re working on a project where we’re recording different songs and compiling them on a CD. We’ve recorded a theme song; “Kiyana and Jessica”, and our Hello Song.
Enjoy listening to our Hello Song!”
Thank you for all that you do! You support the work of Jessica and other therapists providing life-giving therapy. Make a donation today to further support their work!
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