We recently connected with Kelsey Bobka and have shared our conversation below.

Kelsey, looking forward to hearing all of your stories today. Alright, so you had your idea and then what happened? Can you walk us through the story of how you went from just an idea to executing on the idea

After Baine passed away and we went through the motions of having a viewing and a funeral, & burying our child, we realized that as much pain as we were in, we wanted to stop this from happening to another family. We had a family friend who set up a 501c3, and that is how Baine’s Legacy Foundation was established. We knew that we needed to raise awareness for Ornithine Transcarbamylase (OTC) Deficiency. OTCD is rare, but it also can happen to anyone. The symptoms are so vague, that they can be misdiagnosed.

Once we got that set up, we knew that we had to have fundraising events. 7 months after Baine died was our first fundraiser where we did a 5k glow-in-the-dark race, with an amazing fireworks show afterwards. So many people came out to support, and it gave us the drive to keep going.

As always, we appreciate you sharing your insights and we’ve got a few more questions for you, but before we get to all of that can you take a minute to introduce yourself and give our readers some of your back background and context?

I’m a mom of 4 who was living a pretty average life, when my world was turned upside down. My oldest, who was 7, got really sick one day and didn’t make it. Baine had been misdiagnosed for a year or so, and when he died and was finally diagnosed with OTC Deficiency, we knew we had to share our knowledge with others in hopes to save a life.

Baine’s Legacy Foundation was founded in 2018. Since then we have found over 7,000 people through Ancestry DNA, and we get to give them information about OTC Deficiency. They can choose to get tested to help prevent deaths in their family.

Through our research we have found out that there are over 400 mutations of OTC Deficiency. Those 7,000 people we have found only are ONE mutations. That is why raising awareness is so important.

We raise awareness through telling Baine’s story, utilizing social media, and organizing events such as golf tournaments, 5k races, cornhole tournaments, and helping others in our community. We sell Baine’s Legacy merchandise and accept donations on our website as well.

We’d love to hear a story of resilience from your journey.

Most of the other non profit organizations in the rare disease world are there to create a community for others who share a rare disease. They also help others by assisting them financially or helping them find the right medical care.

In our foundation we try to raise awareness which sometimes feels like a losing game. It seems hard to get our story out there and it feels hard to get changes made.

I have to look back on 5 years ago when we first started and how far we’ve come. It’s been slow and steady. When this journey feels overwhelming or frustrating, I have to remind myself that slow and steady is good. We are doing the best we can and we are changing lives.

How about pivoting – can you share the story of a time you’ve had to pivot?

When something tragic happens to you in life, you start to reevaluate what is important to you. I was a hairstylist before I got married and had children. When Baine died I realized I was probably looking for, what I personally thought was “success” in the wrong places. I was bending over backwards for my clients, but I wasn’t bending over backwards for my children. I realized I wanted to spend more time with them. I eventually quit hairstyling and decided what was important for me was telling Baine’s story while spending time with my family. I miss all of my wonderful clientele, but I do love this path that I took. It’s okay to miss the past, but just keep moving forward.

Contact Info:

• Website: www.baineslegacy.com
• Instagram: @baineslegacy19
• Facebook: Baine’s Legacy
• Youtube: @baineslegacy1401

Image Credits
Ashley Mae Photography WOLFAHL Film