Esther Lauaki
Tayte and his brother Jax are about to be two of Brimbank’s littlest superheroes.
The Caroline Springs bothers, seven-year-old Tatye and two-year-old Jax, live with Limb Girdle muscular dystrophy (LGMD)
Limb girdle muscular dystrophy can be diagnosed early in childhood right through to middle age and symptoms include weakness and wasting of muscles, affecting muscles around the shoulders and hips first.
Mum Rebecca Hoban said diagnosis for the boys was a very lengthy process.
“Muscular dystrophy is a progressive muscle disease which can vary from person to person,” Ms Hoban said.
“Knowing this as a parent with two kids facing this disease is heartbreaking and soul destroying. It can make everyday simple tasks near impossible.
“Watching Tayte have difficulties while playing or trying to catch a ball is hard and knowing that Jax will follow the same path is hard to think about.”
There is currently no cure and minimal treatments are available.
Ms Hoban said the costs associated with regular specialist physiotherapy for both boys is one of the most challenging issues
The family will join thousands of children, families and office workers around Australia who will trade ties, backpacks for capes and coats for costumes in Muscular Dystrophy Australia’s National Superhero Week between October 12 and 18.
The annual fundraising effort sees people dress as their favourite superheroes to join the fight against Muscular Dystrophy.
“We are thankful that we have support and a platform where we can raise awareness and funds to find a cure. It has opened our eyes to those in the MD community who are worse off than us,” Ms Hoban said.
Details: bit.ly/2HsP0Lb
