Meet February's Legendairy Little, Ryan

Each month we donate a portion of our proceeds to a child with medical needs through the Legendairy Littles program. During the month of February, we will be featuring Ryan.

At a routine 36-week ultrasound, Ryan’s Mom found out that Ryan had fluid on and around his lungs and skin. Because of this, she was told that she needed to travel to a specialized hospital to allow him to be born right away. Ryan was born at 36 weeks 2 days weighing 6 pounds 6 ounces with an unknown source of Fetal Hydrops. He required immediate intubation and care from a Level IV NICU team. Within two days after birth, his weight dropped to 4 pounds 2 ounces due to his Hydrops. During Ryan’s NICU stay, he required transportation between multiple hospitals in order to receive the specialized care that he needed. Ryan was eventually provided with a g-tube because he struggled with feedings and took more than a month to get back to his birth weight. 

Since being discharged, Ryan has been continuing to grow, now weighing in at almost 18-pounds at 12 months old! He has been diagnosed with a rare genetic condition, Kury-Isidor Syndrome (KURIS). Ryan is currently the 13th patient in the world with this genetic condition and so the prognosis is unknown. This genetic condition can impact developmental delays, poor growth, reduced muscle tone, seizures, and other symptoms. Ryan is additionally under the care of a Urologist as he has Hydronephrosis (swelling) in both kidneys. His ENT provider is helping with Laryngomalacia and Stridor, while his GI and Nutritionist are caring for his g-tube needs. While in the NICU, Ryan had an abnormal brain MRI, so he has a Neurologist following up on that ensuring that he continues to receive the appropriate care. Many of these specialists that Ryan has on his Medical Team are located two-hours away from his home. In addition to the doctors, Ryan also visits weekly with Feeding Therapy, Occupational Therapy, Physical Therapy, and Developmental Therapy. He is working so hard at rolling over and catching up with his milestones. 

Ryan is such a happy little guy and loves to flash a smile to anyone around. He loves to cuddle and read books with his family. His favorite books include Chicka Chicka Boom Boom, The Little Blue Truck, and The Hungry Caterpillar. Ryan has two older brothers who love him so much! The three boys love to spend time together watching Little Bear. Scratchy paper and Chewy Wands are often in his hands. Trialing purees by mouth is a new favorite activity that Ryan is learning to love with carrot being his favorite so far. 

During the month of February Legendairy Milk will be helping Ryan's family to help with his ongoing medical bills.