Tuesday, September 16, 2014

The Life of Kai - a Miracle in Progress

Since this blog is about art and life, I wanted to share the story of the life of Kai. It should be a very short story as Kai is only 3 months old. Yet, he already has a very big story.

Kai - Kaimani Knight-was born on May 14, 2014. The date is important inasmuch as it was two weeks after Oregon enacted a requirement for newborn screening for SCID - Severe Combined Immunodeficiency.
Baby Kai was pronounced a "SCID baby."

Kai's parents, Jason and Nykki Knight brought their baby home with the knowledge that unless a bone marrow donor was found, chances were that Kai would not survive his first year of life. You see, at birth infants have their mother's antibodies. As time passes, they are replaced by their own immune system - is something baby Kai couldn't do.

At less than two months, Kai seemed to have a fever. His folks knew he needed to be taken immediately to the hospital. It was determined there that Kai didn't have a fever (faulty thermometer), but he did have a virus. The doctor recommended that Kai be taken to Doernbecher Hospital for Children in Portland. Jason and Nykki packed and made their way from Eugene to Portland - a two-hour drive.

Once at Doernbecher, they were told that because of the virus, Kai needed to stay in isolation while a search for a donor was conducted. Furthermore, because Nykki Knight is part Samoan, a donor who is part Samoan would probably make a better match. The search was on.

In the meantime, baby Kai was treated to reduce the virus and remained in the isolation ward, along with his parents. During all of the time, his loving and patient parents maintained a positive attitude about the survival and growth of Kai.

Finally, a donor was located! Every one of ten points matched between the donor and Kai!

Kai started chemotherapy to make sure that no part of his immune system was functioning. If it did, then the body would reject the bone marrow transplant. It was not without difficulty that Kai continued to thrive as a sturdy little soul that he is.

On Monday night of this week, this darling 3-month old received the gift of bone marrow from as unknown donor. As is little Kai's nature, he woke up the morning after surgery smiling.

He has a long road ahead of him. He has unbelievably supportive parents. His little body now needs time to accept the transplant.

His parents, the timing of his birth, the early discovery of the virus and now the donor demonstrate what is possible. And, so dear readers, please add your own thoughts of hope and a gentle recovery to his life.

(Kai's parents have neglected their glass-blowing art business for months and have months to go. If you can help, please donate at: http://www.gofundme.com/BabyKai)


  1. What a darling boy! I definitely will do what I can to promote his healing.

  2. R-you have done an amazing job of capturing the story of Kai's life thus far and in advocating for his family. Well done!

    1. Many thanks, Eden. Baby Kai is exceptional - as is his family.

  3. An amazing story, and what a sweet little boy. I understand there is now a significant wait ahead until it's certain that the transplant has been successful. So far the family has had excellent support from helpful friends. sz

    1. Hi SZ, I understand it's 100 days to make sure that the transplant has "taken." It's a very difficult time for one so young. Thank you for all you've done to support the family.

  4. Such a heartwarming story. So happy he's doing well. RW