Poppy’s story

Music therapy is a lifeline for Poppy and her family

Poppy is three years old and lives with Rett syndrome. Her early years were filled with happiness, joy, and discovery. She reached her early milestones: holding her parents’ hands, making her first sounds, and taking her first steps.

But then Poppy stopped babbling, crawling, and walking. She became withdrawn and frustrated. After 12 difficult months, filled with medical tests, countless visits to specialists, and uncertainty, Poppy was diagnosed with Rett syndrome.

Rett syndrome is a rare neurodevelopmental disorder that affects 1 in 10,000 girls worldwide, and is only rarely seen in boys. It’s caused by genetic mutations that disrupt brain development, and causes severe physical disabilities, communication challenges, and learning difficulties. For Poppy, it affects her balance, stability, energy levels, hand function, and ability to communicate. The progressive nature of the condition creates ongoing uncertainty for her and her family.

She was responding to us in ways we didn’t think were possible

From her very first music therapy session, Poppy responded in ways her family had never seen before. The rhythms, sounds, and act of playing an instrument with a music therapist who could reach her through music – it helped her make sense of the world and communicate her feelings. “In every other situation, Poppy struggled to communicate. But with music, it was different,” said Rhiannon, Poppy’s mum. “She was responding to us in ways we didn’t think were possible.”

It’s a place where Poppy belongs

Music therapy has given Poppy a space where she can express herself freely and engage with the world in a joyful and playful way. Each session is adapted to her changing energy levels, ensuring that she feels safe and understood throughout. She uses her hands on a range of instruments which are tailored to her needs. And through music she’s engaging her brain and body, which will help her to maintain her abilities for as long as possible.

The benefits of music therapy have been significant for not only Poppy, but also for her family. It’s helped strengthen Poppy’s relationship with her older sister Charlotte, who had previously struggled to bond with her. Through the music therapy sessions, they found a way to connect, play, and enjoy spending time together. Poppy’s mum Rhiannon has also gained confidence in using musical activities and communication aids to support Poppy’s development.

Music has become a lifeline for Poppy and her family and has brought them joy and hope. “It’s more than just therapy,” says Rhiannon, Poppy’s mum. “It’s a place where Poppy belongs, and where we can enjoy time together celebrating who Poppy is and creating positive memories together in a way we weren’t sure would be possible.”

Poppy’s music therapy sessions are a collaboration between our music therapist Janet and Occupational Therapist, Laura. Poppy attended her sessions at Music Space, an Early Years project in partnership with Craighalbert Centre. Learn more about her sessions and her journey in the video below.

Poppy image credits: Rhiannon Louden / Small Fish Brand Co.