09/29/2026
My daughter has a life-threatening metabolic disease called Glutaric Acidemia Type 1 (GA1).
When people see Emerald, they see a sweet, sassy 3-year-old. What they don't always see is the amount of work that goes into keeping her safe, developing her skills, and giving her the best possible quality of life.
💚 Our therapies are a huge part of Emerald's life.
She participates in:
• Physical Therapy
• Occupational Therapy
• Speech Therapy
• Swallow/feeding therapy
• Music therapy
• Inclusive play
• DMI therapy
• Gait training
• Stander work
• Tobii/AAC communication
• Crawling and motor-development work
We spend hours practicing things many children learn naturally—head control, sitting, crawling, standing, communicating, using both sides of her body, and learning how to move through the world.
And then there is the metabolic side.
🧬 Emerald's current GA1 treatment requires constant attention to her nutrition and metabolism.
She follows a medically prescribed low-lysine/protein-controlled diet and receives specialized GA1 amino-acid formula to provide the nutrients her body needs while limiting the amino acids that can contribute to harmful metabolite production.
She also takes L-carnitine, which is a standard part of long-term GA1 management. Current international recommendations support lifelong carnitine supplementation with monitoring and individualized dosing.
Because illness, fasting, vomiting, or inadequate nutrition can cause the body to enter a catabolic state, we also have an emergency metabolic plan. During a metabolic emergency, treatment focuses on providing enough calories/carbohydrates, temporarily modifying natural protein intake as directed, increasing carnitine when prescribed, and getting medical care when necessary.
So when I say Emerald has a life-threatening disease, I don't say it for sympathy.
I say it because her life requires a level of medical care, therapy, planning, and advocacy that most people never have to think about.
Every therapy session is an investment in what her body can learn.
Every carefully measured feed is part of protecting her brain.
Every appointment, every exercise, every communication attempt, every crawl, every new skill—it all matters.
And we'll keep showing up for every single one. 💚
