Help MJ Milici Fight MELAS Disease
Our daughter, Mary Jane (MJ) Milici, has been courageously fighting MELAS, a rare and progressive mitochondrial disease, for many years. MELAS affects how her cells produce energy, placing her at constant risk for seizures, strokes, respiratory failure, and organ stress.
While in Florida to spend family time together, MJ’s condition suddenly and severely worsened. What we thought was a short trip turned into a medical emergency. MJ is now hospitalized at Tampa General Hospital, where she has spent weeks in critical and step-down care, including time in the Neuro ICU, on a ventilator, and now living with a tracheostomy.
She is no longer in the ICU — which is a blessing — but she is still critically fragile. Progress with MELAS is not linear. One hour can look hopeful, the next terrifying. We are very far from home in Rhode Island, and far from Massachusetts General Hospital, where MJ’s longtime genetic specialist treats her rare disease.
This journey has been overwhelming — emotionally, physically, and financially — and we are asking for help so we can focus on what matters most: keeping MJ safe and giving her the best chance to heal.
How Your Donations Will Help ~
Because MJ’s care is complex and ongoing, donations may be used for the following medically necessary and related expenses:
Medical Transport (Potentially $80,000–$100,000+)
Critical care or air ambulance transport to return MJ to Massachusetts General Hospital, where her MELAS specialist practices.
Specialized transport capable of supporting: Ventilator/respirator needs, Tracheostomy care, Continuous monitoring by critical care nurses or respiratory therapists (Insurance has indicated this may not be covered, despite medical necessity.)
Specialized Medical Care
- Ongoing respirator and tracheostomy care
- Respiratory therapy
- Neurology and genetic disease management
- Swallowing rehabilitation (to help MJ eat and drink safely again)
- PEG feeding tube surgery and follow-up care
MELAS-Specific Needs
- Care coordination with mitochondrial disease specialists
- Stroke prevention monitoring and neuro care
- Medical supplies not covered by insurance
MELAS is rare. Many hospitals treat the crisis in front of them — pneumonia, breathing, infections — but MJ’s disease requires specialized, expert care to prevent further strokes and neurological damage. Every decision impacts her future quality of life.
We are doing everything we can to advocate for MJ while being far from home and navigating a system that doesn’t always account for rare diseases.
From the bottom of our hearts, thank you for reading, sharing, praying, and supporting MJ. Your kindness gives us strength on the hardest days and hope when we need it most.
With love and gratitude,
The Milici Family
Nicole, Marc, MJ, Sofia, Vincent, and Anthony
Organizer
