April Warrior 2024
Malu
Just two days after Malu turned one, his parents noticed some unusual eye movements, but initially didn't think much of it. A few weeks later, it happened again, prompting a trip to the GP where their concerns were dismissed.
During a family visit for Christmas, a week after that, the eye movements returned, this time accompanied by jerking arm motions. Concerned, Malu's parent took him to the local Emergency Department, where doctors witnessed the seizures and immediately advised a transfer to The Royal Children’s Hospital (the most stressful 3-hour drive of their lives). There, an EEG confirmed Infantile Spasms.
Immediate treatment with high-dose steroids was prescribed, which unfortunately didn't offer relief. An increased dose helped a little but Malu looked like a completely different child.
Further investigations, in a deserted RCH (due to COVID lockdowns), revealed Malu had Multi Cortical Focal Dysplasia, a condition where his brain hadn't developed properly on the right hemisphere. Despite trying various medications, Malu's seizures persisted, leading to the recommendation of a hemispherotomy, a surgery to disconnect the affected hemisphere of the brain. This decision was obviously quite a shock for his parents bringing uncertainty for what the future would look like for their beautiful boy, but they proceeded with the procedure seven months after Malu's initial seizure.
Although the surgery went well, complications arose during recovery, landing Malu in the ICU. The following weeks were heart breaking, but Malu gradually regained his cheerful personality and began relearning basic skills like holding his head up, sitting, and eventually walking. Despite setbacks, Malu has made remarkable progress, including the development of his speech and social skills.
Life post-surgery isn't without its challenges. Malu experiences hemiplegia (paralysis or weakness on one side of the body), affecting his left arm, hand and leg, as well as partial vision loss in both eyes. This has meant ongoing therapy and medical appointments, along with adjustments for the entire family. Nevertheless, Malu's resilience and determination inspire his friends and family daily.
Reflecting on their journey, Malu's family advises others facing similar challenges to trust their instincts and advocate tirelessly for their child's needs. Despite the hurdles, they are immensely grateful for Malu's presence in their lives, cherishing each moment and finding strength in his joyous spirit.