Our Kids / Johnny MMA, Mut 0 – Our Trip to the NIH Our NIH Visit, by John and Lourdes (Johnny, 6 Yrs. Old, MMA mut0) This is an account of the week we spent at NIH, participating in the clinical
Our Kids / Hudson & Hope Isovaleric Acidemia The last time we wrote an article for OAA, our children were quite young and we still felt a bit inadequate in caring for their metabolic needs. A lot has changed in
Our Kids / Gavin Isovaleric Acidemia June 7th 2005 was one of the best days of our life’s, Gavin James was born and he was perfect! We were in the hospital for the usual few days, Gavin was a great
Our Kids / Elizabeth Isovaleric Acidemia On September 29, 2005 at 5:41 am, Kent Robert joined our family. He has born a healthy baby weighing in at 8 lbs 11 ounces and measuring 22 inches in length. He has
Our Kids / Elizabeth Propionic Acidemia Our adventure started December 17, 2015. Elizabeth was born on her dad’s birthday. Everything seemed normal, first dirty diaper, hearing test, and heal pricks. When she was two days old, she started losing her
Our Kids / Delany & Nathan MMA Cbl B It has taken me a while to get the courage up to tell you about my children. Sometimes I often read all the stories and wonder why we are so lucky.
Our Kids / Connor & Nathan D-2HGA D-2HGA is a very rare neuro-metabolic disorder in which cells produce a toxin that causes progressive damage to the cerebrum, the part of the brain that controls speech, memory, and movement. Since its
Our Kids / Amber MMA, Mut 0 As I approach the five-year anniversary of my transplant, I recall all that I went through in the hospital — people who visited me, workers who went out of their way to get
Our Kids / Vincent MMA Mut 0 Vince’s story began on February 19, 1997, some of you may have read the article on him about seven years ago. For those of you who didn’t, I’ll go ahead and reintroduce him.
Pregnant mothers can count on one certainty: that a clear or “normal” 20-week prenatal anatomy ultrasound produces an involuntary sigh of relief. You find out that everything is, quite literally, in place.
We’ll be in touch soon!
