To help raise awareness of Methylmalonic Acidemia and other genetic metabolic disorders
Almost 12 years ago, Madeline Avery Smith was born in a Dallas/Fort Worth hospital just as any other newborn in this world. After spending her first night sleeping on her Daddy’s chest, the second night she went to the nursery for feeds, sleep, and to let Mom get some sleep for once too.
“I remember a nurse coming in the room late at night saying Maddie was breathing a little heavy in the nursery and they just wanted us to know that they were watching it closely,” Mom remembers. Of course Mom and Dad were up and to the nursery where they were informed that the doctors ran her blood work and it was way out of normal. The next few days were spent in multiple hospitals where doctors were searching for some kind of diagnosis which could not be found. After eliminating everything they could think of, one specialist recommended she go to Dallas Children’s Hospital where there was a Genetics and Metabolic Specialist. After another ambulance ride to Dallas Children’s Hospital, Maddie went from a near critical state to being diagnosed and stabilized. . . and the journey began.
Maddie was diagnosed with Methylmalonic Acidemia, a rare inborn genetic metabolic disorder that effects 1 in 100,000 individuals. It meant that Maddie’s body couldn’t break down protein correctly and the only management possible was through strict diets and very regimented schedules of supplemental feedings and
medicines. This also meant that every cough, sniffle, or fever put Maddie in the hospital during her early years and also later led to chronic pancreatitis, renal insufficiency/failure, anemia, and several other challenges. From G-Tubes to Ports, and night feeds to dialysis, and now in need of a liver and kidney transplant, Maddie has always handled every challenge with incredible grace, NEVER once complaining but constantly looking for the positive in every situation.
Maddie has this amazing ability to always be happy and really make everyone else around her happy too. She loves to get dressed up with her girlfriends, sing and dance, play video games, walk her dog “Summer”, and be a wonderful big sister to her brother Ryder. She’s always been this beacon of light for everyone in her life to draw peace from, as well as a constant reminder of perspective in this world. Bottom line. . . this world will never be the same now that there’s a Madeline Avery in it! Fortunately, 12 years ago her family was able to get an early diagnosis and great care because there are a wide variety of effects from this disorder.
Methylmalonic Acidemia, and many other metabolic disorders are not well known and therefore can go undiagnosed or untreated, which in many cases can be fatal. Please use the links in this site to learn more about MMA, what is being done to find a cure, as well as what you can do to help.
About The Madeline Avery Foundation
Be an educated Team Member
Reference Page on Methylmalonic Acidemia (MMA)
Dr. Charles Venditti (researching for a cure)
Dallas Children’s Hospital
Organic Acidemia Association
MMA Research Page
Newborn Screening and Info
Texas Donor Registry
Team Maddie on Facebook
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