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
Our Kids / Kristie Lee and Johnny (3-MCC) 3-Methylcrotonyl-CoA Carboxylase Deficiency This is an update on my children Kristie-Lee who is now 13 and Johnny who is now 8. Johnny was born September 20, 2000. He seemed to be a
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
