It was much more of the second when a supportive group of women from the Stanhope Football Netball Club gathered at a ladies day event in support of Mason and his parents Aden and Tameka Cheong.
The club chose to make the family the central focus of its event, ticket sales from the event and other fund raising activities being directed to Mason’s Mission — One in Half a Million.
That is the banner under which the family has been supported by other organisations who have a connection to the cause.
Lowe syndrome is a condition that primarily affects the eyes, brain and kidneys. The disorder occurs almost exclusively in males.
Mason’s smiling eyes are hidden behind thick lenses in his glasses as infants with Lowe syndrome are born with clouding of the lenses in both eyes (congenital cataracts).
His vision is severely affected by the syndrome, but he was certainly enjoying the sounds that surrounded him at the club where both his parents participated in football and netball.
About half of affected infants develop an eye disease called infantile glaucoma, which is characterised by increased pressure within the eyes.
Many individuals with Lowe syndrome have delayed development, and intellectual ability ranges from normal to severely impaired.
Kara Canny approached the family to be the beneficiary of the ladies day event, which attracted 65 women to dual events — one for the under-18 members and another for the senior females at the club.
“The girls’ day and ladies day events presented us with an opportunity to raise some funds to go toward the equipment he needs,” Kara said.
She explained that, from ticket sales alone, there had been $1000 raised and she had hoped to build on this figure from other events on the day.
Tameka said her son was “travelling okay’’ with his condition, in spite of the delay to his skill development.
“He is starting to crawl, which is exciting,” Tameka said.
After weekly trips for the initial stages of Mason’s treatment the family is now required to make a monthly trip to Melbourne for his treatment.
“We have been back and forward to Melbourne a fair bit, weekly up until he turned one and a little less now,” Tameka said.
Aden, who played football for Stanhope up until 2015, said his son’s “happy nature’’ made living with the syndrome a little easier.
He and his wife both played with Stanhope through their junior years.
The decision to live in Kyabam came as a result of having the support of both families.
“Tam’s family is in Merrigum and my family is in Stanhope. We get a bit of respite from the grandparents,” he said.
Mason also has other playmates through the close proximity of family and friends.
Tameka explained that the cost of Mason’s treatment had impacted the couple and things like the Stanhope event were “very much appreciated’’.
She said a recent NDIS decision to give Mason funding had also provided some financial relief for the couple.
“The condition is so rare that they hadn’t heard of it and it took a while for us to be funded,’’ she said.
Mason has a standing frame that he has just received through the NDIS and, through funds from the ladies day, will be able to purchase a mobile walking frame.
“Kids with Lowe syndrome range from mild to severe. I have only been able to find about 15 with the syndrome in Australia.
“And most of those interstate. I have been able to talk to them online,” she said.
A the moment Tameka is almost a full-time carer for her son, apart from a couple of part-time shifts she completes at a supermarket.
“There will be ongoing costs for Mason, his physio and speech therapy.
“We really do appreciate things like this,” she said.
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