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In August 2023 my nephew (just turned 2 at the time) was diagnosed with Infantile neuroaxonal dystrophy (INAD). It is a rare, inherited disorder of the body's nervous system. It affects axons, the part of a neuron (nerve cell) that carries messages from the brain to other parts of the body. INAD causes loss of vision, muscular control, and mental skills.

There are only around 6 cases in the UK and it is estimated that only 150 – 250 children are living with INAD worldwide. Currently, there is no cure, and there are no effective treatments to slow or stop the progression of the disease. The Cure INAD UK is working to change that.

Unfortunately, many children with INAD do not live beyond age 10, but some do survive into their teens or later ages. Supportive care and symptom management can lead to a longer life span by reducing the risk of infections and other complications.

So he was born and progressed normally until he was around 18 months old, when he slowly started to lose the ability to do all the things he was able to do. Including walking, talking, sitting up and drinking.

The charity Cure INAD UK funds research into finding a cure.