Zac’s Story

When Zac was 3 weeks old, Amy and Shane received the heart breaking news that he had Cystic Fibrosis a life limiting, incurable disease affecting internal organs, especially the lungs and digestive system. Sadly they received more devastating news the following year, that Zac was diagnosed with Angelman Syndrome and Epilepsy. This is a rare genetic neurodevelopmental disability, jerky movements, seizures, sleep disturbance and no verbal communication. This was so painful for them to take in, they used all the strength they had to adjust and learn everything they could to help Zac.

Their dream is to create an open plan living space downstairs. This would include a ramp out of the front of the house straight into Zac’s space, creating a bedroom and wet room for Zac with a hoist running straight across. As he is non weight bearing they would widen doorways for his equipment to fit through and form a kitchen/diner where they could all be together at meal times with Zac, which is not possible at the moment. This is such a dream and would make life so much easier for Zac, and them, as a family.

Zac has aggressive gastro reflux, frequently vomiting throughout the day. This new layout would mean that they wouldn’t have to try and rush upstairs with Zac, as everything he needs would be on the same level with the appropriate equipment. Zac could then have more equipment and move around downstairs. This would make physio sessions and Zac’s physical development progress immensely.

A grant for Zac to get this work done covers only part of the cost towards this, so we hope to raise more funds to help this amazing family's dream to become a reality.