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Dan McAloon, Catholic Outlook, May 2008
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When they bought their home in Cambridge Gardens, Anthony and Jenny Bucco were preoccupied with juggling work, finances and home life like many young families in the mortgage belt.
Anthony had a secure job as an IT troubleshooter in which he travelled across Sydney making in-service calls for his firm. Jenny, at home nursing baby Jack, began a degree in mathematics and teaching by correspondence.
The Buccos would not have believed that they would soon become intimately acquainted with a rare form of muscular dystrophy. But soon after his birth, their second son, Morgan, was diagnosed with Ullrich disease.
The condition is progressive and characterised by generalised muscular weaknesses and contractures of multiple joints leading to dislocations.
As a newborn, Morgan's arms had to be supported by splints, and his body and legs encased in a molded plastic brace that ran from under his arms down to his ankles. He now wears leg braces called KAFOs (knee ankle foot orthosis). Now, no one thinks anything of his "armory", though at age three Morgan still has not taken his first steps, and probably never will.
For Anthony and Jenny the last three years have been a struggle to find acceptance in their changed circumstances. As they learned more about Morgan's chronic condition from an ever-widening circle of doctors there came the realisation that even by 21st Century medicine's yardstick there was little known about Ullrich, except that it was incurable. Any "silver bullet" remained many years away.
Morgan's longevity and quality of life cannot be guaranteed. His daily health is maintained through intensive management, including physiotherapy.
"Until you reach that point when you break down, you think you are in control," Anthony said, describing how completely he'd denied depression and soldiered on. Going to work on two hours' sleep, he said he would mask his fatigue by "drinking at least three cans of Red Bull a day" to stay awake.
Jenny's anguish found some respite at a Tresillian Family Care Centre when Morgan was having problems sleeping, and now the family have fortnightly three-hour respite by a carer assigned for Morgan. Overall, her sense of fragility was "as if a single piece of cotton was wrapped around me and it was the only thing keeping me together".
Both parents reached out to Joanne Collier, the family caseworker at the Kingswood Office of Centacare Parramatta, to whom they were referred by health authorities. Centacare Parramatta is a part of Catholic Social Services in the Diocese of Parramatta.
"Joanne really became our rock," Jenny said. "She became the stable, sane, presence in our lives, a sympathetic person who understood what we were going through and who would gave us sound advice when we didn't know how to cope."
Anthony said the hardest thing in life is to ask for help, "because you think it is an admission of weakness". With the assistance of Catholic Social Services, the Buccos have been slowly putting their lives back together.
Morgan, a bright, curly haired boy who is as happy as he watches Thomas the Tank Engine, is the gem in the centre of the family. Now, in addition to his big brother Jack, Morgan has a younger brother in 18-month-old Charlie.
But life with a chronically sick child is fraught with complications. Last year, Morgan caught a viral infection that developed into pneumonia and led to him having up to 30 seizures a day. Fortunately these are now controlled with medication, however, there is still the risk of further seizures when he is ill.
With three young children (one who was in his first year at school, one who was chronically ill, and a newborn) Anthony needed to leave his job as Jenny was unable to cope with taking Morgan to hospital at least three times a week, fulfilling the needs of baby Charlie, and completing her studies. Consequently, the family has no wage coming in, and rising interest rates have not helped matters.
Anthony said that emotional relief had come through the fathers' support group he set up and regularly attends. "There's quite a bit of venting (of anger) and howling at the moon."
Jenny continues with her maths degree part time and makes post-graduation plans for a career as a teacher.
Today, their big challenge is in modifying their home to accommodate Morgan's disability. "He's getting too heavy for me to carry in from the car," Jenny said. The plan is to raise the front lawn so the car can be backed up to the verandah and wheelchair access provided for Morgan.
The family station wagon needs to be replaced with a van to allow Morgan to be wheeled in and out.
Through the STaR Association, a charitable body established at Macquarie University's Special Education Centre, the Buccos now share access to resources for families of children with disabilities.
Donations of work-in-kind to the family can be directed through STaR: landscapers, pavers and labourers welcome! Receipts for cash donations are also tax deductible. For all inquiries contact the STaR Association tel (02) 9888 3717.
