Curing Kylan

Kylan was born on 5/22/19 at The U of M Masonic Children’s hospital needing immediate NICU care. We were informed 1 week prior to his birth that we would be delivering at Children’s hospital but only as precautions to what Doctors were thinking was much smaller than what his case has turned out to be. Within minutes of birth Kylan was separated from us and brought straight to NICU and was placed on CPAP support in order to receive the proper amount of oxygen as he was having apneic episodes (holding his breath/not breathing for long periods of time). Within the first few hours of life we were told that Kylan has fluid in his lungs and thick secretions in his upper airways making him unable to swallow; at this point doctors are unsure if this is what caused his apneic episodes as his anatomical structures are completely fine. He has since been working with an occupational therapist to learn how to swallow and use his muscles in order to do a swallow test under x-ray to see where and how he swallows his food. 

Due to the CPAP he was unable to be fed orally and was placed on a feeding tube using moms milk but quickly found out he was refluxing the food and then aspirating it so he was taken off of moms milk and placed on IV fluids instead. After a few days Dr’s decided to place an NJ tube which goes straight to his small intestines bypassing the stomach where he currently still receives all of his feedings. 

Kylan has been diagnosed with SCID - severe combined immunodeficiency - also known as boy in the bubble disease. Kylan has little to no T-Cells in his immune system to fight off any and all infections. He is currently in isolation where anyone who comes in contact with him needs to wear gowns, gloves and masks to avoid any infections. Anyone showing signs of sickness or having been around anyone sick cannot be in contact with him, as well as anyone who has been recently vaccinated cannot be in contact with him or his family as it may be easily passed on to him with fatal consequences. He was again taken off of moms milk and then placed on donor milk to test for a common infection passed on by birth known as CMV. This test has came back negative and has been placed back on moms milk. 

Kylan has bilateral coloboma of the optic nerve and will have vision loss but at this point we are unsure as to how much loss he will have. 

In his short 14 days of life so far, Kylan has had 3 echocardiograms, an MRI, 2 head ultrasounds and 3 abdominal x-rays and blood tests almost every other day all coming back “as normal as could be” for a newborn with very slight findings that will need to be followed as he grows older. We are currently talking with his NICU team about placing a tracheostomy due to his breathing issues and constant need of suctioning out secretions in order to keep his oxygen levels up. 


Everyday we are learning new things in regards to his health and his needs. We are still sitting without answers to his breathing and swallowing issues and do not have a discharge date. We do know that he won’t be discharged until he is breathing on his own, has gained weight and is able to feed. We have been told he will need constant follow up exams and therapy outside of the hospital. 

Mr. Kylan has yet to meet his sister or any grandparents, aunts, uncles or cousins due to his health. Due to the unforeseen circumstances and his unique situation we are facing some extra medical costs and are asking for your help. If you are unable to donate we also appreciate your kind words of encouragement and we hope all of our friends and family understand how uplifting your words really are in this trying time for us and our family. 

We love you all and can’t wait for you to meet this little miracle of ours someday soon! We will periodic update this section as we find out more news!!