That Fateful Day

It started as a textbook pregnancy. It ended with the emergency transport of our four day old comatose baby to neonatal ICU at the University of Minnesota. There we discovered that our Melissa has rare metabolic disorder. This was the first day of what would be my 21 year journey as the father of a special needs child.

Hi. I’m Lee Stagni. And this is my first posting for 5 Minutes for Special Needs. I asked for this opportunity so that I might share my experiences parenting a special needs child. While I’m sure my story is not that different from yours, my hope is that I might provide some insight from a “father” perspective.

The first step is to get to know one another.

Next June, my wife Kathy and I will celebrate our 25th wedding anniversary. She grew up in Houston and I am from Louisiana. We moved to Minnesota for work in 1984. Melissa, our only child, was born in 1988–two years after we were married. Kathy was 30 and I was 35. Our grand plan was to have our baby later in life, when we were settled. We imagined that our little family would be perfect. Little did we know what was in store for us!

Melissa in NICU

Melissa was born at a local hospital by C-Section. In the nursery, the nurses noticed that she was failing to thrive.

After a battery of tests, they discovered her ammonia level was 800+ (normal is 50). The ammonia streaming through her veins was killing brain cells every second. She was in a coma.

The hospital staff quickly contacted the pediatric metabolic specialists at the U of M and rushed there by ambulance. They performed hemodialysis to lower the ammonia in her system—which was causing brain swelling. And they eventually diagnosed her with a rare, inherited genetic disorder called Propionic Acidemia (PA).

We were in shock. There was little information available then about the disease. And as a result of the brain damage associated with the high ammonia, they were guarded about her prognosis. As you will discover in future posts, we became advocates for her health, education, and took over a global parent/professional support organization to help others whose children are affected with similar metabolic disorders. You can learn more about the disorder by visiting the Organic Acidemia Association at www.oaanews.org

Lee, Kathy and Melissa Stagni

Our 20 year journey has been marked by many challenges. Some were sad and some joyful. Our marriage has been fortified and our faith in God sustained.

Today, Melissa is now one of the oldest survivors with this disease. She has accomplished so much more than anyone expected on that fateful day 21 years ago. We have been truly blessed.

Please join me each Tuesday as I reflect on our journey.

My hope is that my experiences might somehow help as you navigate your voyage through these turbulent waters.

PEACE

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