Macon's Story
Macon was born with bi-lateral club feet, which was treated by orthopaedic surgeons at Duke Children’s. At the time, his parents were told the condition was random.
Shortly after Macon turned 3 his father, Tobie, nearly died from an aortic dissection. Tobie recovered at Duke after surgery, a long ICU stay and coma, but because the event was rare, his surgeon suggested genetic testing. However, the waitlist for testing was incredible long.
Around the same time, Macon had his annual orthopaedic checkup; his orthopaedist connected the family with a Duke pediatric cardiologist who facilitated Tobie’s testing. Six weeks later, Tobie’s condition had a name: Loeys-Dietz type 4, a rare connective tissue disorder caused by a genetic mutation. Macon had a 50/50 chance of receiving the mutated gene from Tobie, and testing confirmed that Macon also has Loey-Dietz -- which explained earlier issues, such as his club feet.
Macon, now 9 and in the 4th grade, receives constant monitoring, especially for his heart, and takes medication to help manage his condition. Loey-Dietz has no cure, but Duke Children’s is helping the family manage his condition.
Macon loves math and STEM classes at school, playing Roblox, and the Percy Jackson series. He's interesting in engineering and outer space. He's currently learning to swim, and recently had his first unsedated MRI with some help from the Child Life team.
Macon wants to help other kids like him, and so he has an annual lemonade fundraiser, Macon's Smiles, to raise money to purchase support items for families at Duke Children’s. Every holiday season he uses funds raised to buy items to help kids at Duke Children's, supporting groups like Child Life in enriching the experience of every patient.
His family knows that at Duke Children's, Macon has a team that has his best interests at heart and will treat him as if he were family.