A mother is struggling to secure adequate healthcare for her eight-year-old daughter, who has chronic kidney disease, following their move to the Border region a year ago. Kylah Marrinon, based in Lavington, has found herself facing numerous challenges in obtaining essential medical services for her eldest child, Ellianhi Haws.
Ellianhi was diagnosed with chronic kidney disease at the age of five and requires regular medications, pediatric care, and continuous medical monitoring from a multi-disciplinary team. Despite Kylah’s persistent efforts to arrange appointments with community pediatricians and other specialists, she has encountered long waitlists and prohibitive costs, leaving Ellianhi without her necessary medications and ultrasound assessments for the past year.
Albury Wodonga Health (AWH) has rejected Kylah’s applications for a community pediatrician for Ellianhi twice, first in September 2024 and again in July, citing extensive waiting lists. Furthermore, Ellianhi’s general practitioner in Albury could not provide a referral to a pediatrician who guarantees bulk billing, which is critical for Kylah as a single mother.
In an effort to find a solution, Kylah reached out to Albury-based Intereach, which referred Ellianhi to Marathon Health. This organization provides care coordination for individuals with chronic conditions across the Murrumbidgee region, including Albury. Although Marathon Health could not comment on Ellianhi’s specific situation, they acknowledged that statewide waitlists for public pediatricians can range from six months to two years.
Kylah has since secured a referral to the Kidney Clinic at the Royal Children’s Hospital in Melbourne, with the first available appointment set for December 4, 2024. Despite this progress, Kylah remains concerned about her daughter’s healthcare. She expressed frustration over the high costs associated with private healthcare, stating, “The private sector is obviously too expensive. Even after the Medicare rebates, it’s still $420 out of pocket for a private pediatrician; it is unaffordable for us.”
Kylah’s daughters, aged eight, six, and four-year-old twins, hold Australian citizenship. The family moved from the Gold Coast to Jindera last year, seeking a better quality of life and improved educational opportunities. However, they recently had to relocate to Lavington due to a rent increase on their Jindera home.
Kylah described her struggle to establish a long-term healthcare plan for Ellianhi, revealing that she feels “stuck” as a mother. She has had to consider taking her daughter to the emergency department when her condition worsens, as she has no other viable options. “She has one functioning kidney, and the more she uses it, the more we risk needing a kidney transplant when she’s older,” Kylah explained.
Kylah highlighted that Ellianhi has been without growth hormones for over a year, which impedes her growth compared to her peers. Previously, the family received regular lab work in the United States, but they have not been able to see any specialists or refill prescriptions since relocating.
As Kylah’s twin boys prepare to join their sisters at Jindera Public School next year, she continues to navigate the complexities of the healthcare system. She emphasized the urgent need for bulk-billed community pediatric services, stating, “I really need Ellie to be bulk billed and seen by a community pediatric service.”
While Kylah looks forward to Ellianhi’s upcoming appointment at the Royal Children’s Hospital, she acknowledges that this is only a small step in addressing her daughter’s complex health needs. With no pathology or scans requested and further appointments with specialists still pending, Kylah remains deeply concerned about the future of her daughter’s health.
AWH was contacted for comment regarding this situation but has not yet responded.
