Introduction To Jack

Jackson West

Jackson West is a 22 year old young man who lives in Canberra Australia. His future is not clear. We don't know where he will live when he leaves home, who will share his home, who his friends will be or how much funding will be available to pay for support.

Many people like Jackson live in the community but are not of the community. Jackson, like so many disabled people in our society, is in danger of becoming a hidden person, a person on the fringe. This is not good for him and it also diminishes our society. He should be highly visible and he needs to be included in a community that values him and the unique gifts he brings with him.

Jackson was born on the 1st January 1986, the third of four boys. He is very gentle and, due to his profound disability, is very vulnerable. Jack has finished school and is now an employee of the JACKmail courier business.

Jackson doing some heavy lifting

Jackson's Disability

Jackson has Phelan-McDermid Syndrome. The characterising chromosome abnormality is a deletion on the 22nd chromosome. A recent fluorescence in situ hybridization (FISH) analysis identified this deletion as well as a trisomy 1. The extra chromosome 1 material is sitting on the end of the 22nd chromosome.

While Jackson shares many characteristics with others with Phelan-McDermid Syndrome, the addition of the trisomy 1 abnormality 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. We are keen to hear of anyone else who has this or a similar chromosome abnormality

Working out at Flame's Gym

How does Jack's disability manifest?

Volunteer dog walking at the pound

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

He 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.

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"Our power as people comes from a sense of collective, not individual, agency; from pursuing a common vision based on shared values, not maximizing individual choice in order to maximize personal satisfaction."

--'Well & Good: How We Feel & Why It Matters' by Richard Eckersley

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