Imogen’s Story

Imogen is a nine-year old girl living with a very rare genetic disorder. The usual life expectancy for children born with the condition is one to two years and Imogen is the oldest surviving child in the UK. Since her case is so unusual, her prognosis is unclear.

Imogen has a visual impairment, very limited verbal communication, and has frequent minor absence seizures due to her epilepsy. Whilst she was able to start walking at the age of six, she often has uncontrolled involuntary movements of her arms and legs. Additionally, her brain processes information slowly, taking 15 seconds to send signals to her eyes and limbs.

With no consistent verbal utterances and limited vision, Imogen is extremely isolated and there isn’t much that she can access in life. However, she responds to music and loves to move to it! 

Imogen’s music therapist Anna said:

“In our first session as I played and sang to Imogen, I noticed that she made almost constant sounds with her voice. She was also interested in exploring the sounds of the instruments around her but seemed unable to hold onto objects – her tendency was to throw them away through her involuntary movements. Her responsiveness to music was immediately apparent, and I saw its potential to help her to communicate and express herself.”

In her sessions, Imogen sits at the piano and has a cymbal, which is firmly fixed along with the other instruments around her, so she can reach out and touch them without them falling. She imitates the sounds sung or played to her by Anna, will wait to take a turn after she has made a sound, and will frequently burst out in laughter if Anna echoes a sound or note back to her!

Through her sessions, Imogen is developing an understanding of the reciprocal possibilities of music-making and is also becoming more engaged in her lessons and in classroom activities. She now turns her head to face whoever is speaking or singing in her class, and joins in with the “Hello” and “Goodbye” songs at the beginning and end of the school day, which her teachers describe as “a significant breakthrough for an extremely isolated little girl.”

Music therapist Anna is thrilled that Imogen is learning to build relationships through musical play saying: “every week I’m amazed at how much focus she puts into working at making music with me. Over the sessions we’ve had together, it’s been a joy to watch Imogen’s development.”