'It's hell watching your child decline': Six-year-old boy's brave battle against Batten Disease
A Sydney couple is fighting to give their six-year-old son a second chance at life after he was diagnosed with a disease that will rob him of his sight, speech and mobility.
Harry Stilwell was diagnosed with Juvenile Batten Disease after his schoolteacher noticed he was straining to see his workbook.
After visiting several eye doctors, Susan and Shawn Stilwell were informed that their son was legally blind.
Mrs Stilwell said she was stunned by the news.
“I had to pick up my other kids that afternoon, and I was thinking there's no way this could happen. I fell to my knees when they told us,” she told the Daily Mail Australia.
“The neurologist said 'he's going to be sick and pass away'.”
Most people suffering from the debilitating disease lose their vision between the ages of four and eight, and eventually become wheel-chair bound and bed-ridden.
Sufferers die prematurely, usually around their twenties.
To further the blow, there is a 25 per cent chance Harry’s siblings Oliver and Macy could be diagnosed with the same condition.
On Tuesday, Mrs Stilwell received a phone call inviting Harry to take part in a clinical trial for Gene Replacement Therapy in the US.
The Balmain mother believes the trial is Harry’s only hope.
“The trials are not approved by the FDA, it's an extremely rare condition,” she said.
“If it works it works, but we're not going to wait around.”
Mrs Stilwell said she is appalled at the lack of funding for Batten Disease research.
“There's just not enough money going into this. People would be horrified if they saw what this disease does.
“It is hell watching your child decline. It feels like no one can help us in Australia.
“Why do we have to move countries to save our kids? It's not fair this is happening in Australia, we're a wealthy country.”
To raise money for Harry’s journey, the family is holding a fundraising event complete with drinks, canapés and an auction.
It will be held on February 25 in Dick’s Hotel in Balmain, Sydney.
Click here to purchase a ticket to the event or donate to the cause.
