June Warrior
Kehlahni
Kehlahni experienced her first seizure at 2.5 months old, shortly after waking while breastfeeding.
The seizure, presenting as a cluster with her eyes rolling back and limbs crunching, was distressing for her and recurrent when waking from naps or sleep.
Despite initial dismissal by doctors as reflux, her mother's persistence led to a visit to the emergency department, suspecting infantile spasms after researching similar symptoms online.
The journey from suspicion to diagnosis was challenging, as infantile spasms were unfamiliar to the initial medical staff, but Kehlahni’s mum refused to quit, having videos of the episodes sent to Neurology.
Three days later, the diagnosis of Infantile Spasms/West Syndrome was confirmed, shocking Kehlahni's family, who had no prior experience with epilepsy, let alone such a rare and serious form.
Epilepsy quickly dominated their lives for the next two years, compounded by the challenge of caring for Kehlahni's older brothers alongside her medical needs.
Despite trying various medications and diets, seizures persisted, eventually categorized as ‘refractory epilepsy’ due to the absence of a clear genetic cause.
Through this ordeal, Kehlahni's family learned that epilepsy doesn’t discriminate—it can affect anyone at any stage of life.
Their once-taken-for granted routines were upended, with Kehlahni's care becoming the focal point of their lives.
Now approaching her fourth birthday, Kehlahni's seizures have lessened in severity, though they remain a daily occurrence, along with occasional focal seizures.
Despite her challenges, Kehlahni works hard and is kicking goals!
Constant physiotherapy, speech, and occupational therapy have been instrumental in her development, despite being globally developmentally delayed.
Her infectious joy and affectionate nature light up the lives of everyone around her.
Kehlahni's love for interaction, outdoor activities, and music, particularly The Wiggles, shines through, bringing delight to her family.
She is their warrior, their light, and their blessing.