Each month we donate a portion of our proceeds to a child with medical needs through the Legendairy Littles program. During the month of December, we will meet Niko, a 6 month-old with a rare form of Polycystic Kidney Disease.
Niko was born with Autosomal Recessive Polycystic Kidney Disease (ARPKD). This is a rare genetic condition that affects one in every 20,000 children. In ARPKD, a baby has fluid filled cysts that cause the kidneys to become enlarged. The stress that this causes prevents the kidneys from working properly, even in the womb. To inherit the “autosomal recessive” nature of this condition, a baby must inherit the recessive gene from both parents.
Around a third of all babies diagnosed with ARPKD will pass away within the first week of life. When a baby is able to survive birth as well as the first several weeks of life will have an 80% chance of surviving into adulthood with frequent medical treatments. Although the name of this condition is related to the kidneys, ARPKS can also impact the liver, lung development, blood pressure, and GI health.
While still in the NICU, Niko had to have one of his kidneys removed because both of them were enlarged and causing too much pressure on his lungs. He also battled high blood pressure and had to try multiple different medications to get that under control. Celebrating every small victory was a big thing for his family, even celebrating that Niko had to stop a medication because it was causing too much urination. Mom worked hard and pumped to provide breast milk for Niko to help give him all the added nutrition that she could. She would leave each NICU visit with all the milk she could produce and work tirelessly to produce whenever she was not at the hospital.
After twelve weeks in the NICU, Niko was able to go home to his parents and 8 year-old brother. Niko does require a g-tube for feeding as well as weekly injections that help prevent the need for a blood transfusion. Niko still makes the long road trip to appointments multiple times every week. He meets with feeding and nutrition therapists, nephrology, general surgery, pediatrics, occupational therapy, and speech therapy. Niko is a true warrior and has overcome countless odds to be finding a healthy routine at home. His family has dedicated so much to providing all the medical care that is demanded with a diagnosis of ARPKD. Mom now stays home to provide care around the clock, and Dad has had to reduce hours at work. Niko was introduced to the MamaRoo swing while in the NICU and fell in love with it.
During the month of December, a portion of our proceeds will be donated to Niko’s family to help with his ongoing medical expenses. If you would like to follow Niko’s story or donate directly to his family, you may do so on their GoFundMe.