A Bridgeman Downs mother has launched an urgent fundraising campaign for her five-year-old daughter who was recently diagnosed with an extremely rare form of muscular dystrophy that has “put a timeline on her life.”
Karlie Kilpatrick’s daughter Araliyah Nikolovski was diagnosed with Emery-Dreifuss Muscular Dystrophy LMNA AD following extensive testing at Queensland Children’s Hospital. The condition, which affects muscle strength and cardiac function, is progressing rapidly in the young girl’s case.
“For Araliyah unfortunately it is progressing very fast. We have already seen a decrease in her abilities to do day-to-day activities,” Kilpatrick stated in her GoFundMe appeal. “This type of muscular dystrophy also affects her heart and lungs which is the worst part of it.”
The Brisbane schoolgirl is now struggling with basic mobility, unable to walk for more than 10–15 minutes without experiencing pain and extreme exhaustion. This has significantly impacted her school attendance and participation in family outings.
The Bridgeman Downs family faces mounting medical expenses and logistical challenges as they adapt to Araliyah’s condition. Their current home has stairs which Araliyah can no longer navigate, and they need to secure wheelchair-accessible housing and transportation.
While waiting for NDIS support, which involves lengthy assessment processes, Kilpatrick has reluctantly turned to community fundraising to address immediate needs like a motorised scooter for Araliyah’s school attendance.
The situation is further complicated as Araliyah’s two-year-old sister, Amyiah, also requires occupational and speech therapy. Kilpatrick, who works at a local gym, is already struggling to balance work commitments with three to four weekly therapy sessions for Araliyah, plus additional hospital appointments.
Kilpatrick anticipates eventually becoming Araliyah’s full-time carer, which will require significant lifestyle adjustments for the entire family.
Beyond the immediate financial support, Kilpatrick hopes to raise awareness about Emery-Dreifuss Muscular Dystrophy LMNA AD, noting that there is limited research on this particular subtype of the condition.
Community members wishing to support the family can find the fundraiser by searching “Ari living with Emery-Dreifuss Muscular Dystrophy” on GoFundMe.
Published 9-March-2025
