AMANDA'S STORY

Hope after Loss: Amanda's Story

Amanda is a wife, mother, and teacher — someone who pours herself into the people she loves most. So when she lost her mom, the grief was immense. What she couldn't have known was that in the weeks that followed, her world would be shaken even further.

Amanda's mother had been diagnosed with a large brain tumor. Surgery went well, but the recovery never came. For nearly five weeks, Amanda stayed by her mother's side — day and night — watching helplessly as her mom slipped into a coma, her body seized, and her systems began to fail. Doctors were puzzled until the Metabolic Specialty team discovered the culprit: dangerously high ammonia levels caused by a rare genetic condition called OTC deficiency — a disease her mother never knew she had. By then, the damage was catastrophic. Amanda's otherwise healthy, vibrant mother passed away at just 59 years old.

The loss was devastating. But the hardest news was still to come.

The Metabolic Specialty team at Children's Hospital Colorado urged Amanda to get tested along with her two daughters, ages 9 and 7. She made the four-hour drive to Denver hoping for peace of mind. Instead, she learned that all three of them carried the same disease that had just taken her mother's life.

OTC deficiency has no cure. Managing it requires lifelong, specialized care. In the months that followed, Amanda and her daughters faced a relentless cycle of appointments, genetic testing, and specialist visits — all while grieving, all while living hours from the city, and all while trying to hold onto some sense of normalcy. Every test, every trip, every expense was multiplied by three. But there is so much hope. Understanding this disease and staying ahead of it is what Amanda's family are doing and are thriving. While she misses her mom each day, she's grateful for the knowledge she has to manage their condition.

"It is scary, but we are moving forward with knowledge now — and it is that knowledge that may stop what happened to my mom from happening to me or my girls. We are so grateful to The Butterfly Foundation for their generosity and kindness during the scariest and most devastating months of our lives. They stepped in when we needed support most, and we couldn't have navigated this without them." Amanda G.

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