Today we’d like to introduce you to Kelsey Bobka.
Kelsey, we appreciate you taking the time to share your story with us today. Where does your story begin?
Baine’s Legacy Foundation was started in 2017 after our son Baine died from a genetic disorder that we knew nothing about. Baine was 7 when he passed away, and a few years before that he was randomly getting sick. His symptoms were vague, and symptoms that many children have. Stomach aches, and nausea, with occasional headaches and vomiting. We would take him to the doctor and get tests ran. All of the tests came back inconclusive. We would go to different doctors each time, and the same answer would be, “I don’t know. He’s a kid, and kids get stomach aches.”
This happened for about a year and a half, when one night at midnight, Baine came into our room and said he didn’t feel well. He got himself a little bucket in case he had to throw up, made himself a little bed on the floor in front of the T.V., and watched Netflix until his stomach ache subsided. That morning when he was sleeping, it made sense to me since he had been up all night not feeling well. But looking back, that was his body slowly slipping into a coma.
After a couple of hours, I woke him up to eat and drink. He was crying and his stomach was really not feeling good. I tried to get him to eat and drink which he did. He then fell back asleep on the couch next to me. I sat with him for a little while. He made little moaning noises. I thought that was because of the stomach pain. I woke him up every once in a while to make sure he was okay. After a little bit when I woke him up I could tell he wasn’t himself. At that point, I began to feel very nervous and scared. I knew his behavior was declining, and fast. I got his 2 little sisters dressed and shoes on so we could take him to the hospital. His sister who was 4 years old had to help me buckle Baine into the car. That is how rapidly he declined.
Our hospital is about a half hour away, by the time I got Baine to the hospital and his Dad met me there, Baine was in a coma. After a series of tests and everything coming back inconclusive, Baine was life-flighted to the nearest children’s hospital. There he received more tests that weren’t showing anything. Finally, after 4 hours or so, the hospital ran the right blood test. Ammonia. The results showed an ammonia level of 275, which is very high. Ammonia tests are not ran on children. It is normally ran on adults. With such a high ammonia level, it was brought to our attention that Baine most likely carried a Urea Cycle Disorder.
We found out that the symptoms that Baine was showing over the course of the last 2 years were connected to Ornithine Transcarbamylase (OTC) Deficiency. Baine was diagnosed with Late Onset OTC Deficiency. We finally had answers, but Baine was not pulling out of his coma. His ammonia levels were still rising. He was on dialysis to clean his blood and had been given very expensive medications. It was slowly bringing his levels down, but Baine wasn’t showing any brain activity. After 36 + hours, and a brain death test, he was pronounced dead on November 24th, 2017.
Burying a child is not something that ANY parent thinks about. You never think it will happen to you until the day it does. Baine was such a healthy, active, smart little boy. He taught our family so much. He was such a big part of our lives. He was our world, and to have him die so quickly, and then go through the motions of planning a funeral was devastating. As it would be for anyone.
With this new knowledge that we had, and the feelings of being blindsided by this disorder, a kind friend of ours who is a lawyer, helped us start a non-profit in Baine’s honor. In this non-profit we raise awareness for OTC Deficiency through events, and selling merchandise. We also have made educational videos. Before Covid-19 happened we were educating at hospitals. We hope to continue to do that again. We also help families in need in our community.
Most recently we hired a professional genetic genealogist to contact thousands of people through Ancestry DNA and let them know that they may have inherited an OTC Deficiency Gene. When Baine died a family contacted us to let us know that they are pretty sure we had a common ancestor and that they also have OTCD. 7 generations ago, the common ancestor was Jane Wright Earl. She had 13 children, and 9 of them had offspring. This genealogist is giving these families something that we were not given – early testing and knowledge.
She contacts them and gives them all of the information about testing and OTCD that they need. It is up to these families to be proactive and to go get the help that they need. With that being said, our family only carries 1 mutation of OTCD. There are over 400 mutations!! Genetic doesn’t mean hereditary. Babies are born with a neonatal de novo gene. These babies are showing signs within 24 hours after birth. They usually don’t make it past 5 days of life. The newborn screening test results don’t make it back in time to save these babies, and some states don’t even have OTCD on the NBS test because of not having the right technology to detect OTCD. OTCD can happen to anyone. Knowledge is power. Knowing the signs and symptoms are key!
Baine is saving lives. His legacy lives on. I don’t get to walk this life with him, but I know he is helping me from the other side and pointing me in the direction that I need to go. I hope his story reaches the families that need to hear it the most. Life isn’t promised. Live each day to the fullest. I don’t believe that we are in this life for it to be hard. There is beauty in the pain. We can’t control what happens to us, but we can definitely control how we respond. I will always feel sad that Baine isn’t here with us – that we don’t get to enjoy life together as a family. I think it’s okay to feel that way, but it’s also up to me to be in control of my life and find the beauty in it.
Can you talk to us a bit about the challenges and lessons you’ve learned along the way? Looking back would you say it’s been easy or smooth in retrospect?
Grief is tough. Not only trying to process my own grief but then recognizing my husband’s grief and my children’s grief was a challenge. Everyone grieves differently. So for me, I went to therapy shortly after Baine died, because I knew I would be the one who would have to help everyone navigate and channel their grief in certain directions. There are also days that it just hits you and you don’t realize what is happening. Our bodies are so smart. Our body remembers what our mind suppresses.
Appreciate you sharing that. What else should we know about what you do?
Baine’s Legacy Foundation is a 501 (c)3. We hold events and sell merchandise to help raise awareness for OTC Deficiency. OTCD is rare but also goes undetected. Just within the last few years, we have found many people who have died and had the wrong diagnosis. They have also linked OTCD to SIDS. We feel it is vital for us to raise awareness and educate others about this disorder.
One of our biggest events happens every July, that’s called Bring Light to Baine’s Legacy. We have a glow-in-the-dark 5k run where a lot of local vendors come to sell and support our cause. We have a lot of things for kids to do, and lots of yummy food. We also have a professional fireworks show at dark. It is a special show where we try to highlight Baine and his legacy. It is a really neat thing to come and experience.
What was your favorite childhood memory?
I grew up in a small farming community on the Utah/Idaho border. My grandparents lived right next door to my family. I loved having my grandparents so close, and I loved when our extended family would come to visit and get to hang out with us on the farm. Now that I’m older I realize how rare that is to be so close with family. I loved growing up where I did and I love the community that we live in. We are pretty dang lucky!
Contact Info:
- Website: www.baineslegacy.com
- Instagram: https://www.instagram.com/baineslegacy19/
- Facebook: https://www.facebook.com/profile.php?id=100070035465175
- Youtube: https://www.youtube.com/channel/UCsZ-J8ywSvEYwXdsnCq_xQA
- Other: https://janewrightearlotc.com/
Image Credits
Ashley Mae
