Name: Neve
Age: 5*
Amber Service: Little Amber
Neve, 5, has a rare genetic condition called GRIN2B, as well as optic nerve hypoplasia and a right aortic arch. She is severely sight impaired, developmentally around six months old, and requires full support for all aspects of daily life.
Since joining Little Amber, music has become one of the biggest sources of comfort and joy in Neve’s life.
“Life with Neve has always been busy,” says her Dad. “There are endless appointments and very little respite. Music has always been something Neve connected with, but as she’s grown older it’s sometimes become harder to find activities or spaces where she truly fits in.”
Music practitioner Helen visits Neve at home, bringing a wide range of sensory instruments including ocean drums, cabasas and chimes. Sessions are completely tailored around Neve’s needs.
“Helen is incredibly kind, smiley and enthusiastic,” says Neve’s dad. “She never reacted negatively to Neve’s meltdowns and always worked entirely at Neve’s pace. It was her patience, compassion and understanding that made such a difference.”
Neve communicates primarily through sounds, facial expressions and movement, but her family have seen huge changes in how she now engages with the world around her. “She is much more outward-looking now and invites people into her play and experiences more. She grips and explores instruments so much more than she used to, and music calms her greatly. It is probably her biggest comfort. Music now fills everyday life at home”.
For Neve and her family, Little Amber has been about far more than music alone — it has brought comfort, understanding, connection and moments of joy in the middle of an often challenging journey.
Neve’s Award is supported by The Powell Family Foundation.
*Age correct at time of publishing
To support other children like Neve on their musical journey, please donate to The Amber Trust. Your support enables us to provide music opportunities to vision impaired children across the UK, including those with additional needs.