About

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My name is Bekah. I am a wife to a track coach, a grieving mommy, and a pursuer of the hard and vulnerable to find truth, joy and love! My son Titus went to be with Jesus on September 17, 2016 at the age of 6 because of a rare and fatal disease, Batten, or CLN2. My youngest, Ely, fights this same disease and is currently in experimental treatment hoping we can put a stop to his progression. We believe that our story is a small part of the BIG God story. That is the framework in which I try to live my life… with a perspective that each day I get to be a part of the greatest story ever told. And you are a part of that story too and I’m thankful our paths have crossed here. Below are more ways to connect with us!

To learn more about our story: click here. This video was taken when Titus was still with us in the fall of 2015.

If you want to get to know Titus, who I’m sure is running through streams and riding on the backs of lions, here’s a music video put together by my husband, song written and performed by our dear friend Jeromy Deibler of FFH: Goodbye for Now.

Connect and follow us on facebook as we update you on Ely and our journey through grief and joy!

 

 

 

5 thoughts on “About

  1. What an amazing outlook on the situation. God is so Awesome and although I can’t even begin to imagine how hard it is, I know your continuous faithfulness to do Lord’s will (not your own) will reach so many! Love you both!

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  2. Your stories are touching, heart wrentching, loving and life. I am a woman who is battling multiple diseases at once, the courage and strength you posess is not lost on me. I wish you well, love, and most precious of all time. Time is the one thing that haunts me daily. I find myself remembering that every 2 years there is a life threatening episode and I have past that now- high alert but also greatful to be here. Starting treatment for a disease that once had NO CURE. My body has fought it for 36 years and now I can be cured. Always be ready- miracles happen every day. I am LIVING proof. Be well my friend and I look forward to hearing more- if you need anything don’t hesitate to ask. Much love- Michele

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  3. Thank you for your upbeat words. God knew you would be great parents and teach the rest of us how it should be done. I will add you and your family to my prayer circle.

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