Meet Alice and her daughter Joy

Joy was born with Wolf-Hirschhorn Syndrome, a rare genetic condition that brings with it a complex web of challenges, including global developmental delay, epilepsy, a heart condition, and significant feeding difficulties. She first came to SNAP with her mum, Alice, who was navigating an overwhelming and often isolating world of hospital appointments, specialist referrals, and unanswered questions; all while searching for a place where Joy could simply be Joy.

From the very beginning, SNAP offered something the medical system couldn’t: a warm, consistent community where Joy was known, celebrated, and supported to thrive at her own pace. In sessions, Joy has blossomed. She has grown stronger, developed her grip, and discovered a love of music, and her face lights up at the sound of maracas and the ocean drum. When Joy received her hearing aid, the change was immediate. She became more aware of the world around her, more vocal, more present. Staff noticed her looking, listening, and talking back. Small moments to some, but they meant everything.

For Alice, SNAP has been a lifeline in more ways than one. Parenting a child with complex needs brings emotional weight, especially watching Joy’s younger sister Eve reach milestones that Joy has not yet reached. SNAP’s Family Support Advisers have been there every step of the way, offering a space to talk, to process, and to feel less alone. When Joy’s feeding difficulties intensified and Alice found herself improvising solutions at home, SNAP staff listened, signposted, and stood alongside her without judgement.

Joy with Services Manager, Rachel, during Shake Your Pom Poms in SNAP Awareness Week

Alice has given back too. She made a video for SNAP Awareness Week, fundraised through the ‘Shake Your Pom Poms’ campaign, and joined the SNAP 200+ Club. She has become part of the fabric of the SNAP community, and through SNAP, she has connected with other families navigating the same rare syndrome, finding solidarity in shared experience.

Joy’s journey is still unfolding. But with SNAP beside them, Alice faces it with a little more strength, and Joy faces it with a little more joy.

See Joy on the front cover of our latest edition of SNAP Matters magazine. Filled with inspiring stories, upcoming events and recent highlights, our termly newsletter is here to update you on all the latest news at SNAP.