By Oliver Lees
Like many mothers, Haidee Murnane has no shortage of praise for her four-year-old son, Harper.
“He is a super cheeky, easy-going and happy boy,” Haidee said.
“He will bond with everyone, he loves to roar as a hello and has a giggle that makes his whole body wobble.”
But unlike other kids, Harper’s childhood has been significantly impacted by a rare and untreatable medical condition.
In late 2019, Harper was diagnosed with Batten Disease, a fatal, inherited disease that begins in childhood.
According to the National Institute of Neurological Disorders and Stroke, Batten Disease stems from a gene defect, that then causes a “cascade of problems”, that means Harper will likely lose his ability to walk, talk, see and eat.
The average life expectancy for such a diagnosis for a three-year-old is seven to 10 years.
Following the diagnosis for her son, who she has affectionately nicknamed Jitterbug, Haidee said bringing attention to this disease is something she feels passionately about.
“I want awareness to be raised for a greater understanding of the condition,” she said.
“I want to see the medical world find a cure so that other families with similar rare conditions know that they are not going through this alone.”
Based in Sunbury, the Murnane family has had support from individuals and groups from across the community, which Haidee has dubbed “Jitterbug’s Tribe”.
Last week, Harper’s grandmother Kerryn Murnane started a GoFundMe page to help raise funds for a new family car, so that Harper can be accommodated comfortably in his wheelchair.
In just seven days the page has received nearly $5000 in donations.
On Saturday, May 8 the Murnane’s will be hosting a birthday for Harper at the Dulam Wilim Hub at Sunbury Heights Primary School, to which all are welcome.
Kerryn said she’s looking forward to giving Harper a special day.
“He hasn’t had a birthday party, and this might be the last one he will be able to participate in,” she said.
Haidee said with the “amazing” support of Jitterbug’s Tribe, she wants to make the most of her time with Harper.
“I want to make as many memories as possible, and for people to know Harper and his condition,” she said.
“The community support is amazing, it has helped us know that we are not alone in this journey.”
To contribute toward the Murnane family’s GoFundMe visit: bit.ly/2RedpZr
