Joseph Worley -Diagnosed with Ring Chromosone 14 in 2017, aged 57 years.

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As Joseph's sister I write this story on his behalf;

Joseph Worley was born full term on 25th May, 1960 following an uncomplicated pregnancy. Tom and Sonia were the parents of Brian and Clifford and Sonia had delivered her second baby, Mary at 7 months who survived only a few hours. Merri-Lyn was born 3 years after Joseph.

Delivery of Joseph was by forceps and he was said to be in a healthy condition at birth. At 36 hours after birth, Joseph’s mother, Sonia noted that he was lethargic and floppy and he wasn’t sucking well. Sonia’s fears were dismissed until he suffered his first cerebral haemorrhage which was surgically removed. Two more haemorrhages followed requiring surgery and Joseph came home after a month. At that point in time seizures remained a constant. Tom and Sonia were advised by medical staff to ‘put him away and get on with life’ as he would live a short, vegetative life. Joseph was diagnosed with Cerebral Palsy with right hemiparesis and generalised spasticity. He had a left sided strabismus to his eye and suffered kyphosis and scoliosis. Joseph learnt to walk by about the age of 6 and wore metal calipers on his hand made boots as his feet were two different sizes. Feeding and weight gain continued to be a struggle and still do today. Many surgeries were performed over the years causing much distress with little success but at the age of 16 years Joseph’s parents decided that no further surgeries would be performed unless necessary. They also believed, based on medical advice that Joseph’s life span was limited and wanted him and the family to enjoy life together.

Today, as Joseph ages he has been hospitalised a number of time for problems associated with Reflux Oesophagitis and other gastro related problems. Until this first occurred in 2010 Joseph has led a life rarely affected by illness though he underwent numerous corrective surgeries and though he suffered seizures as a baby and into his toddler years he has been relatively seizure free until he suffered a Grand-mal when he was 15. Joseph’s current medications are Somac for reflux, Caltrate and Vitamin D supplements.

The love Tom and Sonia had for each other and their commitment to their family became a life long journey to provide the best for their children but for Joseph the best was not enough and they tried anything that helped to improve the quality of his life and allowed him to meet his full potential. Tom was the breadwinner and worked long hours then came home to assist mostly with the care of Joseph whose needs were demanding. Sonia was a dynamic individual who sought out intervention to assist in Joseph’s development and progress and was involved in anything that would assist Joseph and others with a disability. She was an advocate for other families and wanted people she met to see the person with a disability as an individual to be treated and respected equally.

In March, 2017, following a genetic blood test the result was given that Joseph had Ring Chromosone 14 and a whole new world of information and support began.

Sonia always worried that she had done something wrong to cause Joseph’s disability and Tom always suggested that a nurse may have dropped Joseph – they searched for an explanation that they never received yet would love to know that life simply dealt them a challenge and a most beloved special child. (9/11/17)