Those of you who are parents and read this newsletter share something. An incredible climb that someone who is not in your shoes won’t ever be able to fully understand. Every day there is something. Every day there are loved ones who see your child’s struggle and feel the urge to do something.
When Bekah Murphy learned that her brother, Danny Bowman, received the most devastating news a father could hear, she felt this too. With a diagnosis like CLN2 Batten disease in the family, there is so much to process, it can be incredibly daunting to know where to begin. The layers of complexity can leave loved ones who want to help wondering if they will even make a difference.
“I’ve had an incredible desire to help in some way for a while now,” said Bekah. She looked at the skyline behind her house and the idea sprouted. Bekah might not be able to live in the shoes of her brother and sister-in-law but she can use what is right around her to shed light on important lives and raise money for other kids like her nephews Ely and Titus Bowman. Amidst the grief of Titus passing away last year, she felt the pull even more to create a place for fellowship and action now.
So it began, Bekah made a phone call to BDSRA to share her idea to climb five mountain peaks in five weeks and within a few weeks was promoting her website on social media and to local news media. The site highlighted several family stories, including her own and housed photos and updates each week from her hikes. It also had a portal to donate directly online.
Week after week, the photos went up and the positive energy around the event was evident on social media. The serendipitous moments were abundant. On a day where Bekah had worn blue in memory of Bentley Betts, she crested the summit of Thomas Mountain and came upon thousands of blue wildflowers. Bekah, her husband Brad and the other family members and friends who joined her along the way were always hiking with beloved children in mind. Those who hiked, those who shared online, those who donated, created a memorable experience to show that these important lives will not be overlooked or forgotten, but shine and live on by supporting others on the same difficult path. Bekah raised $2,000 for BDSRA and contributed to thousands of new eyes and ears learning about Batten disease.
If you ask Bekah if one person’s simple idea, commitment and follow through can make a difference the answer is a big YES. The outpouring of comments and support were clear. Her actions were deeply appreciated by many. While a simple solution to all of the problems might not be available overnight, we know that it is one piece of the puzzle; we know that there is a snowball effect. Activities that share knowledge, create connection, honor loved ones and grow resources to share as a community directly impact lives today.
To see photos and stories from Bekah’s hikes, the site is still live here: https://battendisease.wixsite.com/5peaksin5weeks
If you share a similar desire to do something, reach out to email@example.com.
Thank you Bekah and Brad Murphy, thank you Bowman family and extended circle of friends. Thank you families who shared their story for the website. We are grateful for your voices and actions.