JOSH Molloy (13) loves to take photos and his brother Tom (10) loves playing baseball.
The pair both enjoy playing Xbox as well and their mother Vanessa said they are “chatty and friendly” children.
“They are just normal boys; they just have a few more challenges,” she said.
Those challenges stem from a rare genetic condition, Duchenne muscular dystrophy, the boys have, but does not prevent them enjoying the same things as many boys their age.
The family spoke to the Weekender ahead of International Day of Persons with Disabilities this Sunday, December 3.
“In my spare time I like to play on my Xbox – I play online with my friends,” Josh said.
“I’m also getting into photography.”
The Ashdale Secondary College Year 8 student said he enjoyed nature and landscape photography, setting up his own Instagram account and one for the family pet, Izy the Cavoodle.
Tom, who is in Year 4 at Madeley Primary School, recently joined the Challenger Division Perth Northern Metros baseball club.
“It’s baseball for kids with special needs,” his mother said.
“He is just loving that – it’s so good for him to be playing.”
Mrs Molloy said Josh was also keen to get into wheelchair sports, but couldn’t make the training sessions.
Josh is taking part in a standing wheelchair study established by Save Our Sons Duchenne Foundation and has had his $43,000 chair since April 2015.
Thanks to the chair, which adjusts to put him in a standing position, he was able to ‘walk’ to his Year 6 graduation with his peers.
However, there are still challenges.
“There are places I can’t access with this wheelchair,” Josh said.
“Going to other people’s houses, I have to use another wheelchair which isn’t as comfortable.”
Tom uses a motorised scooter and both boys need fulltime aids while they are at school.
Duchenne is a progressive muscle-wasting condition with no cure that affects one in 3500 boys, and in very rare cases, girls.
Once diagnosed, boys normally need to use a wheelchair between the ages of seven and 12, and most do not live beyond their 20s.
Mrs Molloy said she, husband Scott and the children focused on making the most of enjoying life together.
“We take each day as it comes,” she said.
“We tend to focus on all the things as a family that the boys can do.”
Mrs Molloy said while she carried the gene for Duchenne muscular dystrophy, there was no family history of the condition.
Her brother does not have it nor were her sister or nieces carriers, but Josh’s twin Olivia has not yet been tested to see if she too is a carrier.
“It’s very rare – she may be a carrier because I am,” Mrs Molloy said.
She said Josh was initially misdiagnosed with cerebral palsy and was almost five years old when tests showed he had Duchenne muscular dystrophy.
“When Josh was diagnosed, we had Tom tested – he was 15 months,” she said.
“It’s quite a daunting diagnosis to have.”
Mrs Molloy said they received support from the Duchenne Foundation and families dealing with the same challenges.
Save Our Sons has been conducting research into the benefits of standing wheelchairs, giving boys support that the condition takes away from them.
There are also clinical trials into different treatments and Mrs Molloy said research might help find a cure “if not for my boys, for future generations”.
“The research side of things is really important but we kind of need help day to day,” she said.
“It’s day to day equipment that’s really important to give them a good quality of life.”
Mrs Molloy said they had plenty of support from family and friends, and a group of school mothers had run fundraisers to help make their back garden more accessible and to buy the family a van modified to suit their needs.
“We are very lucky that way – a lot of people out there don’t have that,” she said.
The foundation aims to provide more equipment and funds for a specialist neuromuscular nurse at children’s hospitals to support regular testing required for children with the condition.