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
Our Kids / Matthew MMA Cbl A Hi! My name is Matthew, I was born in Tucson, Arizona on February 3, 1971. My development was fairly normal. According to my Mom, I met developmental milestones on time, talked early at
Our Kids / Elaina Rose MMA Elaina Rose was born April 23rd, 2017 weighing 6lbs 12oz and had a head full of beautiful brown hair and she was absolutely perfect. Everything was going great; we got discharged to go home
Our Kids / Avery Malonic Acidemia About two weeks after we brought our new daughter Avery home from the hospital we received a call from our pediatrician’s office telling us that the state department of health had contacted them and
Our Kids / Stephanie & Jack D2HGA I’ve been meaning to write Stephanie’s story (and now Jack’s story) for a long time. It just seemed like such a monumental task. The recent death of a very special baby boy with
