Zephyr Spark’s family are quite literally playing for time.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
The Bendigo four year old is fighting fatal genetic condition, Batten Disease which will see his cells gradually fail.
A new treatment offers hope of extra time, but the family know Zephyr’s needs will increase as the disease progresses.
To raise funds Zephyr’s father Robert Spark and his boss James Boyd will take to the green on Monday to play golf continuously for 24 hours.
Read more: Family farewells a bright Spark
Zephyr was diagnosed with Batten Disease as a baby. He was tested for it at birth, as his older sister Jasmine had been diagnosed some years earlier.
In 2015 Jasmine passed away from the disease, aged just eight.
The effects of a disease which has already taken one child from them are hard for Mr Spark to describe.
He and his wife Carolyn’s lives now revolve completely around their family.
“You’re constantly trying to make sure that your kids, in particular Zephyr and Jasmine have the most life they could given it’s a short one,” Mr Spark said.
“It’s hard to make plans because you never quite know what’s around the corner.”
An inherited genetic disorder, the cells of those with Batten Disease don’t produce the enzyme which allow them to clear waste, which causes it to build up.
It affects about four in every 100,000 births.
Children with Batten Disease often appear to develop as normal before the appearance of symptoms such as seizures, developmental delay, loss of language and cognitive abilities.
At the age of four Zephyr is still a happy boy, and planning to head to kindergarten next year.
He is non-verbal, and has experienced a few seizures to date, but the disease is likely to begin to affect his abilities more severely in the next few years.
A new therapy does promise a glimmer of hope however. Recently approved in Australia, enzyme replacement therapy could give Zephyr extra months or even years of life.
Twice a week enzymes are infused directly into Zephyr’s brain via a port put in last year.
These enzymes slow the regression of brain function caused by the disease.
“The hope is that it’ll extend his life and his abilities and his enjoyment of life as well,” Mr Spark said.
“Even in the short period of time that we found out about Batten Disease they’ve come a long way.”
Having gone through the same experience with their daughter Jasmine the family knows that as Zephyr’s needs increases they will face a barrage of costs for care and travel.
Golf was something Mr Spark and Mr Boyd could both do to take action. They aim to play 100 holes of golf during their 24 hours on the green.
Mr Spark is also encouraging anyone with a view to a round of golf in the next few weeks to head to the golf club as a portion of green fees will be donated.
Mr Boyd and Mr Spark will begin their 24 hours of golf at 8.30am on Monday December 3 at Bendigo Golf Club. A barbecue will be available from 5.30pm.
More information at facebook.com/ChronicalsofZephyr/
Have you signed up to the Bendigo Advertiser's daily newsletter and breaking news emails? You can register below and make sure you are up to date with everything that's happening in central Victoria.