The story of Nicholas
To All Who Will Listen,
My name is Nicholas, and I am a father fighting relentlessly for the life, health, and future of my 7-year-old daughter, Michaela. She has Rett syndrome, a rare genetic disorder that has taken much from her—her voice, coordination, and independence—but it has not taken her spirit, nor my hope for a brighter future.
In recent months, I have written letters, made calls, and sought out the best doctors and researchers in this field. I’ve reached out to experts, including Dr. Jennifer Martelle Tu at UCSF Benioff Children’s Hospital, clinical trial coordinators, and Rett syndrome researchers, asking for guidance and opportunities to improve Michaela’s quality of life. Yet despite my efforts, I have yet to find the breakthrough she needs. Time is precious, and I will not give up.
Michaela’s daily reality is marked by seizures, respiratory struggles, scoliosis, and the inability to speak or fully control her movements. Hypotonia is taking its toll, and she has begun to lose the ability to walk. Still, she tries with all her strength, her little legs shaking, showing me she is not ready to give up. But regular doctors aren’t enough; she needs a committed medical team that truly understands her condition and fights for her future, just as I do.
I acknowledge my past mistakes and understand if I must face consequences. But Michaela hasn’t done anything wrong; she deserves a chance at a better life. I will do whatever it takes—move across the country if necessary—to secure the care she needs. My life is now dedicated to hers.
Thank you for listening.