Brave Josiah an inspiration
Noosa woman Sonia McMahon is in awe of the sheer tenacity of her two-year-old nephew, Josiah Robinson.
Along with her brother Shane and his partner Cecilia, Sonia has watched with growing amazement as this young fighter refuses to be overcome by a rare form of Muscular Dystrophy known as Myotubular Myopathy.
“The first year of his life he was constantly having serious complication after complication,” said Sonia, who is helping organise a fundraising concert for Josiah in Noosaville Lions Park on September 4.
It was only four months ago that his parents, Shane and Cecilia, were able to take him from hospital to his Brisbane home – after they took a crash course in 24-hour care.
Josiah’s incredible spirit is something that Sonia gains fresh insights into.
“I came away from their place the other day shaking my head,” she said.
Sonia has been told by his parents how he is using sensors attached to his leg to monitor his oxygen levels – because he cannot cry to let them know of any distress. But his aunt says his parents believe Josiah is setting this off to get their attention – to let them know he is awake and in need of some company.
The family takes great heart that there is a boy on the Gold Coast aged 12 who has been able to overcome many of the hurdles this disease has thrown at him.
Most of Josiah’s medical needs are taken care of, but Shane and Cecilia are in desperate need of a family car to help improve Josiah’s quality of life as public transport is not an option.
Sonia said the “Let’s Laugh for Josiah” benefit concert had come together through some amazing connecting circles with the help of people like Helen Barber and Kath Williams – her choirmaster in the Insingc Choir, which will be part of the performance line-up.
Sonia said that when she felt stopped in her tracks by the cost of public liability insurance, Susie Brown of the Let’s Laugh laughter clinics offered to become involved so they could use her policy.
Other top liners at the event, which will run from 11am to 5pm, will be Barry Charles, Harii Bandhu, Ebony Rose and Sophisticat, while many choir members will help with stalls. There will also be free children’s activities, a jumping castle, roving entertainers, workshops, raffles, prizes and giveaways.
“We are urging the community to get behind this worthy cause,” Helen said.
“We are also wanting any local businesses to help with prize donations or offers of goods or services on the day of the concert.”
Please contact Sonia regarding donations on 0427 137 140.