BRISBANE parents John and Anna Williams face the heartbreaking prospect of their two sons dying before they are 30.
Hugo and Oscar have Duchenne muscular dystrophy, a disorder that primarily affects boys and may leave them wheelchair-bound as teenagers.
Mrs Williams, 37, is a carrier of the disease, but was totally unaware of the fact until after the boys were born as she was adopted as a child and her biological family’s history was never disclosed.
She and husband John, 43, say it’s their brave boys who will hold the family together.
It wasn’t until December 2014 that doctors made the gut-wrenching discovery that Oscar, then aged 6, had muscular dystrophy. Two months later, then two-year-old Hugo was also diagnosed.
Their shocked parents waited a harrowing 12 months for doctors to determine the type of muscular dystrophy and were dealt another blow when told the boys had Duchenne – the most severe type.
“My boys had a 50/50 chance of getting a mutated gene and, unfortunately, they were unlucky twice,” Mrs Williams said.
“I wouldn’t change my boys, but I would have liked to have had a chance to actually decide whether I start a family or not.”
She said 2015 was a “long year of grief, loss and acceptance”.
“Duchenne’s is the worst, it’s the highest killer of young men of any of the muscular dystrophy. Most boys don’t make it to their early 20s.”
“Our boys are doing better than most … they will probably be looking at wheelchairs in their late teens rather than as eight to 12 year olds.”
There is no known cure for the condition and it is life limiting as it weakens all muscles, including the heart.
Hugo is now three and non-verbal, while Oscar is seven and his parents have tried to be open with him about what his future holds.
The Ferny Grove family are now fundraising to ensure the boys have the best lives possible.
The brothers will need wheelchairs, bed lifts, household aids, communication aids, transport modifications and specialised therapies in coming years.
See Facebook page Williams Brothers Wish to help, or visit mycause.com.au/page/119474/ williams-brothers-wish