Before the world of medically complex motherhood, it was easier to introduce myself by the labels I believed defined me. My name is Aneesa, and I was born and raised in Trinidad. I migrated to the United States in 2004, carrying with me an accent, a faith shaped by discipline and devotion and a quiet certainty that life would unfold according to an understandable plan. I am now a naturalized citizen, and my family here consists of my children, my friends and my church family. I believed I knew who I was.
What I believe now is that God, in His infinite wisdom, had packed the pieces of my life into a puzzle box, sealed it tightly, and waited for the precise moment to open it and reveal a masterpiece. Only later did I realize that nothing was random. Over more than four decades, every lesson, detour and skill acquired without clear purpose was positioning me for a role I never asked for: Becoming a global advocate in the rare disease community, particularly for mitochondrial disease, specifically thymidine kinase 2 deficiency (TK2d), which is the disease my youngest son, Jeremiah, lives with every day.
I was educated in Catholic schools during my elementary and secondary years under the guidance of my mother, a nurse who believed deeply in balance. She insisted I be well-rounded academically, spiritually and socially. I served in church, school and community activities, played sports, and no matter how busy life became, she ensured we made time for God and service. As a child, I found it irritating, but as an adult, I recognize it as intentional foundational formation.
In my tertiary education, I earned a master’s degree in business administration with concentrations in marketing and economics, along with certifications in grant writing and entrepreneurship. I became a local public speaking leader in Toastmasters International, managed businesses, modeled hair, wrote independently for newspapers and magazines and penned speeches for political candidates. I have been married and divorced, but most importantly, I have been a mother for nearly two decades.
None of those experiences prepared me for the moment my youngest child was diagnosed with TK2d, a rare and devastating mitochondrial disease that affects his ability to eat, move and breathe.
In an instant, life shifted. Work became impossible, isolation became necessary, and exhaustion became constant. I was no longer “just” a mom; I became a caregiver, nurse, therapist, teacher, advocate and life-sustaining force. My son’s survival depends on my vigilance.
What I did not realize at first was that I had been preparing all along.
Growing up in Trinidad, we were taught how to speak, write, tell a story, and I excelled at it. When it came time to tell Jeremiah’s story to doctors, researchers, policymakers, and strangers across the world, it flowed naturally. Ironically, the only time I went to work with my mother I fainted when she drew blood. Yet today I stand steady through multiple intubations, changing my son’s tracheostomy weekly, and providing skilled medical care daily. Jeremiah is ventilator-dependent, G-tube fed, has limited mobility, and is fully dependent on me for everything, even while he sleeps.
Where I once led with professional titles, I now lead with motherhood. I am the mother of four: J’aiden, Josiahs, Jamari, and Jeremiah. That title brings me the greatest joy and deepest purpose. The woman I thought I lost was the one God was quietly grooming for this assignment.
Today, I am the author of the first global book on TK2d. I am a sole entrepreneur running a marketing business, managing social media for local businesses and overseeing my son’s advocacy platforms. I help others start businesses, write grants and pursue their dreams. I serve on global rare disease committees, act as a Consumer Peer Reviewer for Department of Defense Medical Programs and sit on patient and family advisory councils, including the United Mitochondrial Disease Foundation and the Medical University of South Carolina. I also serve in various capacities in church and on boards supporting medically complex children.
Above all, I am a mother who loves God, loves her children, serves as my mother taught me, advocates fiercely and leaves the light on for others.
I am Aneesa, a uniquely qualified rare mom. To those walking similar paths: Do not compare your journey to another’s, because comparison steals joy. Remember your name and who you are because the light within you will guide the way; even when you feel lost, the puzzle pieces fit.
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