
Leo – Isovaleric Acidemia, Age 20 months
Leonardo was born on November 27, 2021. He was the second child of ours, and he was seemingly perfect. I gave birth to my first child in April of 2020 in the midst of the pandemic where he was taken

Leonardo was born on November 27, 2021. He was the second child of ours, and he was seemingly perfect. I gave birth to my first child in April of 2020 in the midst of the pandemic where he was taken

Our Kids / Katie Glutaric Acidemia, Type 1 – Age 23 I was diagnosed with Glutaric Aciduria Type 1 when I was 6 years old. The doctors tested me for GA1 because my 15-year-old brother had just got diagnosed. Before

Our Kids / Cameron, Methylmalonic Acidemia, Cbl C, Age 6 Methylmalonic Acidemia caused by Cobalamin C deficiency….Before our daughter Cameron was born we had never even heard about this organic acid disorder. From the onset this term changed our lives.

Our Kids / Nolan, Propionic Acidemia, Age 18 Months Nolan was born in September 2021 after a healthy, low risk, and uneventful pregnancy. Initially all appeared well, although hindsight is 20/20, right? Nolan is my third child and did not

Our Kids / Henry, MMA, Cobalamin C, Age 2 Henry was born in 2020 in Missouri. I had a normal pregnancy and delivery. He was born at 39 weeks, but only weighed 5lbs 13oz. This was my first clue that

Our Kids / Destiny, Glutaric Acidemia, Type 1, 20 years old Destiny is a bright and cheerful 20-year-old. She is our middle child of three with an older brother and younger sister who both still antagonize her like any normal

Our Kids / Mason Cobalamin C Deficiency, Age 7 In the fall of 2014, we were living the “classic” American dream. We had a 2-year-old daughter, a yellow Labrador and were about to have our son. Mason was born December

Our Kids / Taryn MMA Cbl A, Age 22 Hi my name is Taryn and on January 30, 2000, I was born at 3:15pm at Jefferson Hospital in Philadelphia, Pennsylvania and weighed 7 pounds 1 ounce. When I was born,

Our Kids / Allison and Marcel Propionic Acidemia Allison is 14 years old and Marcel is 18 months old, both were diagnosed with Propionic Acidemia through newborn screening. Allison was hospitalized for a few days right after her diagnosis was

A wonderful experience in the air Traveling with our PA twins has really not been much of an option for us unless it’s a 3-4 hour drive at most. They are easily car sick and long road trips just don’t
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