Help Grace
find her voice

She has taught us so much

During pregnancy no issues were found. It wasn't until just before Grace was three months old that our journey began. At four months we knew she had a brain abnormality, and tests for genetics started at six months. A year later we found out our daughter had TUBB3 — a rare genetic condition. Grace is considered to be on the severe end of the spectrum.

After meeting with our geneticist we were put in contact with other families, and finding that community has been so helpful — pre- and post-diagnosis. It's enabled us to gain so much knowledge to support our daughter.

Grace is medically complex and there are incredibly hard days. But as a family we choose not to focus on those days. She has taught us so much — from learning to see things in a different way, to advocating fiercely for her needs to be met. We celebrate all the little milestones, because for her they are massive. She didn't laugh until she was three. But what people don't always see is her immense love for music, the excitement of being caught in the wind, how the sea brings her so much joy, how she becomes a mermaid in the water — and most importantly, how she likes to be part of the conversation, no matter how loud or quiet.

“Remember, your child's diagnosis and needs do not define who they are.”

An eye gaze device would give Grace something she doesn't yet have — a voice of her own. By tracking where she looks, it lets her control a screen with just her gaze: choosing, expressing, communicating on her own terms. We're raising £5,000–£10,000 to make it happen.