Jackson's disability

Jackson with his grandmother Marie, grandfather Bill & cousin Lulu

Jackson has two chromosomal abnormalities. These are mutations in his DNA which mean he cannot produce the proteins needed for normal brain function.

One mutation is called Phelan-McDermid Syndrome, which is a deletion on the 22nd chromosome. The second is some extra 1st chromosome material which is sitting on the end of the 22nd chromosome. These were identified by fluorescence in situ hybridization (FISH) analysis in December 2007. Before this, his family had always thought that he had an extra terminal band on the long arm of the 22nd chromosome as this was as exact as early tests could be.

While Jackson shares many characteristics with others with Phelan-McDermid Syndrome, the addition of the chromosome 1 material make Jackson's disability unique. Jackson is also one of the oldest people in the world identified to have Phelan-McDermid syndrome, as the FISH test has only been recently developed.

How does Jack's disability manifest?

Jackson at the Walk Against Warming protest

Jackson has no speech, but communicates many of his needs clearly. He is extremely mobile and needs to be supervised at all times.

Jackson depends on others for every aspect of his life from personal care and feeding to interpreting his needs and wants and keeping him safe. He sleeps poorly, often waking for several hours for up to 10 nights in a row before he sleeps exhaustedly through for up to 3 nights and the cycle starts again.

Jackson has had a number of operations, the first when he was 10 months old when one of his kidneys was removed. Other operations include a hernia repair, metal pins in both ankles, nasal cauterisation and dental work. On the 21st September 2003 he had a triple arthrodesis. This involved fusing three bones in his left ankle and inserting four metal pins to stabilise lateral movement. He was in plaster for three months; the operation was moderately successful. Two of the bones have not fused, resulting in arthritis at that point. Jackson still walks with a noticeable gait.