Kalani Ebbs has faced a lot in her short life, but the support of the i98FM Illawarra Convoy community is giving her and her parents some relief.
Diagnosed with brain cancer in March aged just seven months, the little Dapto girl is halfway through the most intensive chemotherapy regimen a child can take.
It’s her best chance of fighting the rare cancer – Atypical teratoid rhabdoid tumour or ATRT – caused by a genetic abnormality.
‘’Kalani was born missing chromosome 22, the tumour suppressor gene, which made her predisposed to having cancer – it was just a matter of what, and when,’’ her mother Charlene said.
‘’When she was about four months old we realised she was slow hitting milestones, and by five months her head started tilting to the side every time we picked her up.
‘’Then she started vomiting up one feed a day, then two feeds daily the next week, until she was constantly vomiting.’’
Charlene and her husband Justin rushed Kalani to Wollongong Hospital, where an MRI revealed every parent’s worst nightmare.
‘’We were told she had a 3x4cm tumour – which shattered our world,’’ Mrs Ebbs said. ‘’Twelve hours later she was at Sydney children’s hospital having the tumour removed.’’
Kalani has had a central line inserted into her chest, and a head reservoir, for the delivery of chemo drugs. She’s also had to endure radiation.
‘’She’s such an amazing child,’’ Mrs Ebbs said. ‘’She’s spent most of the last nine months in either Sydney or Wollongong hospitals, having treatment and blood transfusions and fighting infections, but she never complains.’’
It’s been hard for the couple, and their other children Kallen and Khaleesi, to watch. Hard too to keep up with normal life – going to work, paying the bills.
It’s helped to get food and fuel vouchers from the Illawarra Community Foundation, set up in January to distribute funds from the convoy to families in need – and the charities which support them.
It also lifts the family’s spirits to see the community get behind the event.
‘’Before we became part of convoy, we had no idea how hard these guys work behind the scenes to support families like ours,’’ Mrs Ebbs said.
Best locations to view convoy
The convoy will depart under police escort from Illawarra Coal’s West Cliff Colliery on Appin Rd around 8.15am on Sunday.
It will wind its way down Mt Ousley, through Warrawong and past Stockland Shellharbour, then onto Croome Road, Albion Park.
The best vantage points to watch the convoy include any of the overpasses on the F6 to Master’s Rd; the top of Mt Ousley; Master’s Rd, Coniston; King St, Warrawong; Windang Rd, Windang; Shellharbour Rd, Shellharbour; Lake Entrance Rd and New Lake Entrance Rd, Shellharbour.
The action will continue with a free family fun day at the Croome Road Sporting Complex. Sneaky Sound System, Darryl Braithwaite, The Lah Lah’s, local band Lyon Estate and The Yatcon Civil FMX Freestyle Riders will be among the acts on the day.
To view convoy live, and for all the images from the day, head to illawarramercury.com.au on Sunday.