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.
Join TEAM MADDIE, and donate to help raise awareness for MMA and to help fund the research which is working to find a cure!
About The Madeline Avery Foundation
SUPPORT TEAM MADDIE!
Gifts of any amount can go a long way. By joining Team Maddie and giving to the Madeline Avery Foundation, you are helping to raise awareness of Methylmalonic Acidemia and other genetic metabolic disorders, while funding the research for a cure. All while helping better the lives of the families that have children with Methylmalonic Acidemia.
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THE MADDIE MUSIC PROJECT!
Maddie now, as many of the children with this disorder experience, is on dialysis and awaiting a liver and kidney dual organ transplant. Following in her Dad’s footsteps, she loves music and what better way to have a positive influence on the world than with the power of music. This is why the Madeline Avery Foundation is proud to announce The Maddie Music Project, a benefit album with support from musicians willing to use their gift to make a difference for kids like Maddie.
Imagine for a second,
you are a budding, up and coming, Texas musician, with a woeful respect of the Texas legends whose stages and microphones you now grace. Second to a family, it’s all you ever wanted. Well, that’s the story for many musicians, but for one, that story took a much different turn. In 2002, Trey Smith, just coming off the road touring, doing radio shows, was about to record his debut album. At that same time, his wife and high school sweetheart, had their first child Madeline Avery, who was born with Methylmalonic Acidemia, a rare genetic metabolic disorder. The effects of this disorder forced Trey to abandon music and focus on a career to provide not only money but insurance for his family.” The next dozen years would be spent with Mom having to quit work and stay home to follow a very strict 24 hour regiment of feeds and medicines. The years were also spent in and out of Dallas Children’s Hospital, where Maddie would experience stages of acidosis, chronic pancreatitis, surgeries, anemia and eventually renal failure do to the effects of this disorder.
• 12 songs by 12 different artists
• Proceeds from the album sales go to the Madeline Avery Foundation
• The songs are songs written by the Dad from his days as a musician
Download the Press Kit
To get behind The Maddie Music Project in any way, please email us at
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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the form here.