Each month we donate a portion of our proceeds to a child with medical needs through the Legendairy Littles program. During the month of January, we will be featuring George.
George was born at 36 weeks gestation. Through his newborn screenings while in the NICU, George was diagnosed with Pompe Disease. Pompe Disease is often referred to as glycogen storage disorder and is a rare genetic disorder that affects only 1 in every 40,000 infants. Pompe comes from a missing enzyme that breaks down glycogen, causing it to build up in muscles, forcing muscles, including the heart and lungs, to become weak.
George is such a strong little boy. He is monitored regularly, involving visits to a cardiologist, occupational therapist, physical therapist, speech therapist, pulmonologist, endocrinologist, geneticist, neurologist, and lab work. The specialists that George needs to see are five hours from his home, resulting in a lot of time traveling and nights in hotels.
Pompe Disease in newborns is very new and, therefore, is still being researched. Duke University School of Medicine is the leader in Pompe Disease research in the United States. Although it is still new, it is clear to doctors that treatment must begin early because muscle damage can be permanent. Although there is no cure for Pompe, there is treatment. The current treatment protocol consists of an enzyme replacement therapy every two weeks for life. George has not begun his enzyme replacement therapy yet, but his medical team is monitoring him closely to begin it at the best time for George.
George loves to do tummy time while listening to CocoMelon, especially his “Purple Monkey” song. Watching toys that light up and sing to him are his favorite ways to spend his days. He is so well-behaved at long doctor appointments, always with a big smile that shows off his cute dimples. Spending time with family, cuddling his soft blankets and stuffies, and relaxing in a warm bath are the highlights of any day for George.
During the month of January, Legendairy Milk will be making a donation to George’s family to help with his ongoing medical expenses.