Just before his first birthday, Marley was diagnosed with Tay-Sachs disease - a rare, life-limiting genetic condition. Some of the symptoms include being overly startled by loud noises, developmental delays, low muscle tone, difficulties with swallowing, vision loss, and seizures.

Since receiving the diagnosis, Marley’s family have made it their mission to cherish every single day and create meaningful memories together.

“After Marley’s diagnosis, all we wanted was to keep him safe - to protect him in our little bubble,” explains mum, Chloe. “So, when our consultant first mentioned Haven House Children’s Hospice, I was hesitant. I didn’t know what to expect - the word ‘hospice’ can feel overwhelming. But when I learned about the incredible therapies they offer for children like Marley, we decided to give it a try.”

That first step was through Haven House’s Music Therapy service, delivered at home, marking the beginning of a truly supportive journey for the family.

A space to express, connect, and shine

The sessions were personalised entirely around Marley’s needs and abilities. Our music therapist carefully followed his cues, gently introducing instruments and sounds at Marley’s pace.

“For a long time, we avoided busy baby classes because Marley is so vulnerable to illness,” says Chloe. “When Haven House offered music therapy tailored just for him, it felt really special.

“Seeing him smile and respond to the music was absolutely magical,” Chloe adds. “It’s not just a music session - it’s a moment of connection, joy, and expression for him.”

After the one-to-one sessions, the family joined a small group class with another little boy - a friendship that has been as uplifting for Marley as it has for his parents.

Moments that stay with you

One memory, in particular, stands out.

“During a song, the therapist sings a line and pauses - and every single time, Marley makes these little noises, almost like he’s acknowledging the music has stopped and is anticipating what’s next,” shares Chloe. “It might seem like a small thing, but for us, it’s huge. It shows how engaged he is and how much joy it brings him.”

The music sessions have also brought connection beyond the therapy itself.

“Meeting other mums who truly understand what we’re going through has been incredible,” Chloe explains. “That sense of community has been just as important as the therapy.”

More than just music

“For us, music is a language,” says Chloe. “It’s how we connect, how Marley expresses himself when words aren’t possible. It gives him a voice - we can see his personality shine through the music.”

Music has now become a treasured part of their journey together, creating joyful moments and memories they will always hold close.

Specialist Music Therapy, funded by the Amy Winehouse Foundation

Haven House’s music therapy service, generously funded by the Amy Winehouse Foundation, is a specialist form of support that plays a vital role in the lives of children with complex medical needs. Through music, children like Marley are given the opportunity to express themselves, connect with others, and experience moments of joy even when verbal communication may not be possible.

The sessions are carefully tailored to each child’s abilities, with our trained music therapist using sound, rhythm, and instruments to encourage interaction, engagement, and emotional expression in a way that feels safe and meaningful. Thanks to the support of the Amy Winehouse Foundation, this unique service continues to help families feel supported, uplifted, and connected.