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WINTER 17
such heavy stuff for a five-year-old to process and my heart was truly broken for both my children,” Tiff recalls. “But Bailey has inspired Sam and Sam is now at University doing Bio-Medicine and going down the research path as he wants to find cures for disease to help others.” Tiff says communication is key when it comes to parents of special needs children and that the right mind-set is paramount. “A positive attitude goes along way, as does support from family and friends. Some friends have found the journey difficult and no longer have contact, however we have made friends we never thought we would through this journey. Bailey says his everyday life is physically taxing at times due to his extreme pain. He says it was also frustrating not being able to attend mainstream high school and having to do Distance Education from home because he missed out on the social contact. Despite this, it hasn’t stopped his educational achievements – he is planning on completing further education in IT or social media.
“Life is full on with Bailey but we wouldn’t have it any other way. He is such a positive and inspiring young adult who has faced so much adversity and taken on every challenge with a smile on his face. We are so proud of him and his brother.”
“Bailey says his biggest challenge now that he is older is relying on people to care for him 24/7 and in particular doing his personal care. It is also hard for him when his friends are turning 17, getting their licences and becoming more independent, whereas Bailey is becoming more reliant on people to assist him,” Tiff says.
Congenital muscular dystrophy (CMD) refers to a group of muscular dystrophies that reveal themselves at or soon after birth.
One of the biggest challenges that stemmed from Bailey’s situation was the impact it had on his healthy older brother Sam, 19. “Life was difficult for him as I was always in hospital with Bailey. I clearly remember when Sam was five and the PICU doctors were talking to him about the fact that his brother may not live. He didn’t cry, he just asked lots of questions and I could see his mind processing this. Shortly after this Sam and I were walking down the long corridor of PICU when Sam tugged on my hand and said ‘mum what do we do when Bailey dies?’ – my gosh, this was
Congenital muscular dystrophy
There are at least 30 different types of CMD and most children with CMD exhibit some progressive muscle weakness, although they can have different symptoms, degrees of severity and rates of progression. This weakness, usually first identified as hypotonia, or lack of muscle tone, can make an infant seem ‘floppy’. Later, infants and toddlers may be slow to meet motor milestones such as rolling over, sitting up or walking, or may not meet some milestones at all. The majority of CMD types are related to proteins that make up or interact with the extracellular matrix that surrounds muscle fibres.