MILWAUKEE – For one local family, the pain of loss will never go away, but relying on family continues to help them move forward.

Here is the Grebe family in 2024: Mike, Kelly, Tripp and Griffin.

Two other members are always very present with them; Bridger developed normally for nearly a year before it stopped, and he was eventually diagnosed with infantile neuroaxonal dystrophy, an extremely rare condition that eventually took his life at age 9 . His younger brother, Essex, was also affected and died at age 7.

Tripp Grebe: As I’ve gotten older and looked back, I think more than anything, I learned a lot from my parents during that time. Many times we thought life was normal. We knew Bridger and Essex weren’t progressing at the pace they should have, but our lives continued anyway. Our family always went on vacation together. We always went to Brewers games together. Bridger and Essex came to all our baseball, football and basketball games. So more than anything, as I get older, I reflect on how special our time with Bridger and Essex was.

SUBSCRIBE TODAY: Get daily headlines and breaking news stories delivered to your email from FOX6 News

FOX6’s Tim Van Vooren: I know you used the word “must-have”. I think that’s part of what makes it so hard to understand, because that word describes what you’ve had to deal with. What is it like to live with this inevitability?

Mike Grebe: Sometimes it was very, very difficult and trying, and sometimes unpleasant. And there’s just no way around it. But there’s another side to this, which is that it forces you to confront the immediacy of time with your family right now. And that’s a really valuable and, in some ways, remarkable lesson that Bridger and Essex taught me. You can’t forget the immediacy of time spent with your family. Kiss him.

Tim Van Vooren of FOX6: Griffin, you seem like an empathetic guy. How much of this empathy comes from your personal experience?

Griffon Grebe: Oh my God. The characteristics, the traits that I try to have, that I strive to have, the empathy, the compassion, right? The amount of these traits from my experiences with Bridger and Essex is incredible. One of the main things it taught is that you don’t know what people are going through, right? Like you have no idea what’s going on in their lives. It happened with us. We would meet someone and they don’t know what’s going on. I don’t know. I think even though that happened to us, I think we’re very lucky to have two people who taught us that so well.

Tim Van Vooren of FOX6: For over a decade, the Grebes have organized a softball game to raise funds for research and support of INAD. This year, this event took place at the University School. Mike, Tripp and Griffin are all former Wildcats players and now the school will play on Field of Bridger and Essex Grebes.

Kelly Grebe: Having their name on the field, baseball being so important to our family. I mean we live and breathe baseball, we love baseball. And to be able to name this field after themselves, they never got to play, but they’re here playing now. »

Tim Van Vooren of FOX6: Do you feel cheated? Have you ever felt cheated?

Mike Grebe: No. If I felt cheated, it would mean that I wanted and expected these two boys to be someone other than who they were. They were who they were, they had this condition. As sad as it is and as much as I mourn their loss, we do not mourn their lives. They were handsome boys and I don’t feel cheated at all. We are a better family and better people because they were in our lives.

FREE DOWNLOAD: Get breaking news alerts in the FOX6 News app for iOS or Android.

Kelly Grebe: In life, we should count our blessings, not our curses, and those are amazing blessings.

Tripp Grebe: And in all honesty, I think there was a point in my life where I felt like maybe I was being cheated. And that’s a bit what I think of when I watch these videos of young people who are currently fighting against the INAD. I don’t blame these families or these siblings if they feel like they’re being cheated right now, because when I found out Bridger and Essex had INAD, and they were still with us , I thought about it sometimes, how unfair it is. . Why does it have to be our family? Why do they have to be my little brothers? On a human level, our family loves each other very much and I have had the chance to spend time with Bridger and Essex. But I also thank God every day that I have Griffin.

Griffon Grebe: I think seeing how many times we alluded to them or certain examples of what happened, how many times we looked at each other and smiled. We have good memories that come from it, we really do, and it would be so easy, it would be so easy, to look at it and focus on the bad things, but there were so many good things and good experiences and memories that We have. And I think being able to talk about it and being able to smile, it means so much. It means so much. »

For more information and ways to support other families facing challenges related to this disease, visit National Institute of Neurological Disorders and Stroke website.