For the past year, I have been grappling with the heart-wrenching reality that my little boy is facing a terminal illness. The medical community’s assessments were bleak: a rare genetic mutation with only a handful of documented cases. The prognosis? He wouldn’t live past his second birthday. The initial advice was simple: cherish every moment together.
Life had been blissful before the diagnosis; I had a vibrant toddler, a loving partner, and a satisfying career. It’s astonishing how quickly everything can change. My son, Leo, had been a picture of health, a spirited 12-month-old full of life. Then, seemingly overnight, he stopped crawling.
“It’s probably just a phase,” I told myself. “He’s just tired.” Friends reassured me, “You’re overreacting, Maya! He’s fine!” But as weeks passed, he lost his ability to sit, roll over, and eventually even control his neck. An MRI revealed progressive leukoencephalopathy, meaning his brain was deteriorating, affecting all motor skills.
At 14 months, the diagnosis was confirmed: multiple mitochondrial dysfunction syndrome type 3. The doctors warned that his condition would decline, and soon he would need feeding and breathing tubes. They had written him off.
So What Do You Do When Faced with the Unimaginable?
Initially, you cry and scream. You mourn the future you envisioned for your child. It’s essential to let yourself feel that pain; it will stay with you forever. But through the grief, you discover profound strength and resilience. You fight fiercely for your child, advocating tirelessly for their needs.
I have met some of the strongest people through this journey—mothers of children with special needs or terminal conditions. If you need something accomplished, reach out to one of us. We are relentless warriors.
This experience taught me the value of every moment. I learned to eliminate distractions from my life; what once seemed monumental now appears trivial. Surprisingly, I developed a dark humor, finding laughter in the face of adversity. Grief is constant, creeping up at unexpected times, especially during solitary moments when I glance into the rearview mirror, and he’s not there.
Financial strain became a reality; medical bills piled up, even for someone in Canada. I had to find a flexible job, which led me to start my own business—something I never thought I’d do. It allows me to be home with Leo while still engaging in meaningful work.
People often surprise you in times of crisis. Some you thought would support you may fade away, while others you never expected become your strongest allies.
What Did I Do for Leo?
I refused to accept the doctors’ grim prognosis. I couldn’t let him be written off. It’s remarkable how frequently children like Leo defy the odds. Once I learned about mitochondrial disease, or “mito,” I dove into research, advocating for treatments, contacting doctors and specialists worldwide.
Today, Leo is 27 months old. He has regained some motor skills and can sit up for short periods, show signs of improved vision, and even communicate in simple sentences. His favorite phrase? “I did it!”
While hope, love, and perseverance don’t guarantee survival, they provide a fighting chance even when others have given up. Leo is surrounded by a supportive network of medical professionals, therapists, and family who believe in his capabilities.
Instead of waiting for the worst, I choose to live fully, cherishing every laugh and moment we share together.
For more insights on navigating difficult journeys like this, check out this excellent resource on pregnancy and home insemination. And if you’re looking into the process of home insemination, consider visiting this related blog for guidance.
In Summary
When faced with the devastating news of a child’s illness, embrace the pain, fight fiercely, and cherish every moment.