Zack is a very cheeky and happy young boy with a wicked sense of humour. He loves listening to music and he especially enjoys the sound of a guitar. He particularly likes swimming at school, physio, stretching, and standing in his stander.

Zack is patient and persists even in the face of challenges. Zack likes being outside and feeling the sun on his face and the wind in his hair. His family love to see how happy and vocal he becomes when he explores the great outdoors.

Zack lives with his mum, dad, and sister Bella. He is a sociable young boy and he loves to spend time with his family. He likes to be around people and to feel included. Although he is non-verbal, he communicates with his family, friends, and carers through sounds and facial expressions.

Zack has a genetic mutation that causes generalised dystonia (involuntary sustained muscle contractions), spasticity (stiffness in the muscles), epilepsy, visual impairment, and learning delays. He cannot walk, talk, or eat, and is fed through a tube directly into his stomach. He also takes medicines throughout the day to keep him comfortable.

Zack requires constant care, which can make day-to-day life difficult for his family. Thankfully, they have support in the home to help them get things done and spend quality time together.

Zack’s family found Variety, the Children’s Charity when his school suggested coming to us for help with an equipment grant. We were able to help them with a specialist chair that gives Zack the correct support for his posture and keeps him comfortable.

Due to having poor head control and muscle tone, Zack needs specialist seating to join in with social and craft activities. Since receiving his new chair, Zack has been able to spend time in other rooms in the house and has felt more included as he is now level with other seating in the house. He is even enjoying spending more time with the family dogs as he is now at the right level to stroke them.

Zack’s mum, Amelia, said:

It’s hard for people to understand the impact of a genetic mutation when they haven’t been through it themselves. It takes a long time to get to know a child’s likes and dislikes when they are nonverbal, and people don’t see the person within.

Thank you to Variety for your support. We are grateful for charities like Variety who support us with Zack’s equipment.

Story by: Chloe Owen, PR and Communications Officer