Meet May’s Legendairy Little, Kylie

Each month we donate a portion of our proceeds to a child with medical needs through the 

Legendairy Littles program. During the month of May, we will be featuring Kylie.

Kylie was born full term in November 2023. Immediately after she was born, Kylie had trouble breathing and was taken to the NICU where she spent one week. At the end of that first week, she was not improving and was transferred to another hospital where, despite being on multiple ventilators, Kylie did not improve. Her medical team quickly ran out of treatment plans and were confused why Kylie was struggling, so they sent off a genetic panel test for lung diseases. While her family waited for the genetic test results, doctors recommended placing Kylie on hospice care as they feared transferring to another hospital would be fatal. Kylie’s family made the difficult decision to transfer her to another medical center. Under new care, she did become stable and was switched from the oscillator to the nava ventilator. At seven-weeks old, Kylie’s parents were finally able to hold her for the first time.

Genetic testing came back and shattered everyone’s hearts. Kylie was diagnosed with a rare genetic mutation, Surfactant B Deficiency . There is very little information available on this condition as there have only been 34 reported cases. Kylie’s lungs don’t make the substance needed to keep them from fully deflating after every single breath. The heartbreaking news is that there is no treatment or cure for this disease and it has a life expectancy of 3-6 months. Kylie’s only option is a lung transplant. Because of the severity of her condition, there are only two hospitals in the US that will perform a lung transplant on an infant.

Thankfully, Kylie was accepted at one of the hospitals to start her evaluation for 

lung transplant . Her parents left their home and jobs to travel states away in an effort to give Kylie a chance for life. Even more, Kylie’s 9-year-old sister is left “back home” with loved ones. After one month living in the hospital, Kylie was approved and listed on the lung transplant list.

Kylie is such a fighter and has overcome so much in her first four months of life. She’s survived sepsis , multiple staph infections , and multiple pneumonia infections.Kylie has spent her entire life inside the hospital walls requiring a ventilator to survive. Being on the transplant list is an emotional roller coaster, any infection or small detail can alter Kylie’s transplant listing status. Kylie’s family and supporters continue to remain hopeful for a miracle and a lung transplant will become available so they can spend more time with her.

Kylie loves to be read books and enjoy the hanging toys above her head. Her favorite song is  Oceans  by Hillsong. 

During the month of May, Legendairy Milk will be making a donation to Kylie’s family to help with her ongoing medical expenses. If you would like to follow along with Kylie’s story, you can do so through her Facebook Group . You can donate directly to Kylie’s family through their GoFundMe.