We all hope our children will live long and healthy lives. Unfortunately, for some parents, this is not their reality.

In 2020, Carley and Bryden, along with their young daughter Elsie, were looking forward to the arrival of their second child, Albert.

On meeting him for the very first time, a beautiful boy with a mass of black hair, Carley knew something was not right – Albert wasn’t crying.

Carley told us, “I kept saying: He’s not crying. Why is he not crying?” After being resuscitated, Albert was admitted into the Neonatal Intensive Care Unit (NICU) and later the Paediatric Intensive Care Unit (PICU) while the family awaited a diagnosis.

After three heart-wrenching weeks of tests and uncertainty, Albert was diagnosed with Myotubular Myopathy, a life-limiting, rare neuromuscular disease, affecting all muscles but the heart. It severely affects breathing and swallowing.

Bryden says, “It’s basically a deformity of the muscle cells, the only muscle cells that aren’t affected are in his heart.”

Albert was given just weeks to live. Carley and Bryden were told that Albert would most likely live his limited life in a debilitative state.

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