MY STORY
WHY I CLIMB
MY INSPIRATION TO TAKE ACTION
I’m Bekah Murphy, and I am embarking on a journey to hike five mountain peaks in five weeks on behalf of all children with Batten disease. Families with a child diagnosed with Batten disease have an incredibly challenging road ahead of them. Support is vital. I want to raise emergency funds for them and educate others about what they face and how you can help.
I am connected to the Batten world fairly closely, as the mutated gene is carried throughout our family, including in me. My husband and our precious son also carry it. (He does not have the disease, he is only a carrier. We are very thankful!) The only way we would ever know this is if we ran a genetic test. This is exactly what we did after we learned that our sweet nephews, Titus and Ely were diagnosed with Batten disease.
I’ve had an incredible desire to help in some way for a while now. I've seen the love shown to my brother and sister-in-law and I kept thinking about all of the other Batten families out there. I wanted to do something to raise money for them and show them the love and support that our family has seen.
Treatments and countless doctor bills can be devastating financially. As a Batten family you are constantly in and out of doctor’s offices and hospitals. Even before the diagnosis, you can spend years trying to find out what is happening to your child. That’s why I decided that I would do a fundraiser to help create emergency funds for all Batten families.
I love the mountains and I live in beautiful northeast Washington surrounded by hiking opportunities. There are mountain peaks out there that I haven’t tackled before and I want to help "climb the mountain" for Batten families. So I’m climbing five peaks in five weeks.
My goal is to raise 10K to create a family emergency fund within these five weeks. Along the way, I am grateful to highlight a different Batten child each week to bring awareness to the disease. It is a gift to get to know these sweet children and an honor to introduce them to you! We were not meant to live life alone. We need each other. And sometimes a little bit of money can do more than purchase a needed item, but it can strengthen one's soul for yet another day.
My husband Brad is accompanying me on each hike and some other family members and friends will be joining along the way as well. Follow me on my hikes by checking in on this site each week. I will be posting photos, videos and updates after each peak I climb.
WHY SHOULD YOU HELP?
As you can imagine, this disease has shook my brother and sister-in-law to the core. There has been deep sadness and yet great hope all at once. What helps to keep the hope alive is the countless blessings poured out from others to our family. Blessings of prayer, hugs, encouragement, funds, and assistance with special equipment and therapy to make the boys' lives more comfortable. The support from others in the community has meant the world because this diagnosis can feel very isolating as it is so rare. Donate to my climb today!
