A local sporting club is showing its support for a little girl by hosting a community fun day that will help raise awareness and cover the costs of her ongoing treatments and equipment, as her family fights for answers around her mystery genetic disease.
Ellie King is a happy child who loves playing and interacting with other kids but, despite her big smile, the four-year-old has faced many challenges.
After being diagnosed with global developmental delays and being at high risk of cerebral palsy, her parents Jarryd and Hannah were determined to find the cause of her struggles and the best course of treatment.
“We were told the only way to confirm cerebral palsy was an MRI, which came back clear, so there was no diagnosis there,” Jarryd said. “We just went through a process then of lots of different tests and treatments just to see if anything would work.”
But they were met with dead ends and uncertainty.
“We did a lot of genetic testing, a lot of lumbar punctures, a lot of procedures to get some information and everything sort of came back clear every time which was a bit confusing,” Jarryd said.
“Basically what we’ve been told now is they’re almost certain it’s a genetic disease, there’s just nothing out there to determine what genetic disease it is.”
And they’ve had to watch their little girl go through procedures with no guarantee that they’ll be effective.
“There was one lumbar puncture that she got that didn’t come back very good and we had to go through a treatment, and the treatment was hard,” Hannah said. “They redid the test and the test came back all clear so the treatment that we went through was for nothing basically.
“I think that’s the worst part about not having a diagnosis is she’s poked and prodded for tests and treatments and such and the only way to find out if something works is to try it and depending on what it is there’s needles and cannulas and all that.”
Ellie is undergoing physiotherapy, occupational therapy and speech therapy and is making progress at her own pace.
She also receives botox injections in her legs every six months, which provides temporary relief, and has more scans, tests and appointments scheduled in the coming months.
“The geneticist that we saw recently mentioned that there were a couple of trials but we’ll speak to the person running the trial to get a bit more detail about that so I’m not 100 per cent sure where that will lead,” Jarryd said.
“We follow up with the neurologist at Sydney Children’s in January and basically whenever we have a neurologist appointment coming up we never know really what to expect or what they’re going to come up with but we do know that there’s going to be another medication they want to try her on to help with her muscle stiffness,” Hannah said.
Fortunately, the Kings have a strong support system through their family, friends, workplaces and a local sporting club.
Through witnessing their experience, Berkeley Sports Football Club saw an opportunity to help out even further by hosting a family fun day charity event.
“As a football fraternity we’re very close to a lot of the players and people involved in our soccer club so it gives us an opportunity to do something for kids that we know for our club,” vice-president Graham Crouch said.
“It comes pretty easily when it’s a close-knit soccer club, a family club, so to be able to be in the position to be able to do this is terrific.”
“I was just so grateful for the club for offering to do it for us and putting it all together and all the support we’ve had come in,” Jarryd said.
It’s the club’s third charity event supporting local kids and families, with social matches for all ages and abilities to be showcased across the day, including a new spin on their annual ‘Old Boys’ match.
“Our highlight this year is definitely going to be a women’s match which will be terrific and a lot of fun,” Graham said. “It will be a ladies versus women’s team which is going to be made up of past players and the wives and girlfriends of our current players.”
And it’s not just for club members, with the whole community encouraged to bring the family along for a day of fun with Ellie.
“She loves being around kids so there’s going to be jumping castles and lots of kids there so she’ll have a great time,” Jarryd said. “That’s a big thing for us – to make sure she’s happy.”
The event runs Saturday 11 November at Berkeley Sports Field, off Wilkinson Street, with gates opening at 10 am.
If you can’t make it on the day and still want to support the King family contact Berkeley Sports Football Club at [email protected]