FOLLOW MY HIKES
5 Peaks in 5 Weeks
Hike #1
Sunday, May 28th: Mt. Rogers
Summit 5777 Ft.
In memory of Titus Bowman and in honor of Ely Bowman (my nephews!)
I chose the date for my first hike to be May 28th. This is my oldest nephew's birthday and he would have been 7 years old. Titus passed away last year and we miss him dearly! He and his younger brother Ely, both were diagnosed with Batten disease. Amidst the grief, I praise God that Titus is now completely healed from this disease and running around heaven. And it is for these amazing boys, and all the other children with Batten disease, that I hike. Titus loved life! His laugh and smile were amazing. He loved people and his family. Dinosaurs, butterflies, and the color yellow were some of his favorite things! I will always remember his big hugs and energy. He demonstrated joy in the midst of pain. The things we can learn from little children are everlasting.
"Ely's personality is curious, observant, he's a little quirky and loves to make people laugh... definitely a clown. He's a snuggler and you can usually find him with a blankey in hand. He loves people and will say hi to just about anyone when we are out in public. He enjoys being outside, finding bugs and walking to the water, playing on the slides and swings at the park and exploring. He really enjoys camping which is a recent hobby we have started doing with him. He also loves all kinds of animals, but from a distance first. Once he warms up to them, it's best friends forever. His favorite animals are whales, lions, monkeys and elephants and he seems to really enjoy being around dogs. He likes things that are "high in the sky" like airplanes and kites, and he enjoys playing with wind chimes and balloons. Ely has joy everywhere he goes and is a very happy boy who finds adventure in everything.
His diagnosis came about because his older brother, Titus, was diagnosed with CLN2, (a description is found under the About Batten tab) or late infantile classic batten disease. Because Titus had it, we knew we had to get Ely tested. His test came back positive with the genetic disease in June of 2015 and we began advocating for him to receive a promising experimental medication called enzyme replacement therapy. Because of his early diagnosis (we are so thankful to Titus for), Ely was able to begin this treatment prior to any major regression. He has a speech delay and can, at times, not have the best coordination. However, Ely has not yet had a seizure and has passed up the age his brother was when he started seizing. Ely has been on this enzyme replacement therapy for 34 weeks! So far he is not regressing in his disease. We continue to plug away with therapy intervention in speech, occupational and physical categories. Ely also attends a special education classroom where he receives services at school to help him continue to build skills and be successful in his preschool classroom. We try to take time out of our week for fun, whether that means something big like Disneyland or small like a play date at the park. And always, every day, Ely keeps us laughing and entertained. He is truly a gift." -Bekah Bowman, Mother
After hike summary: We had an amazing time! We encountered incredible views, fallen trees, feet of snow, intermittent streams, mosquitoes, and great fellowship. I was honored to hike for Titus (Happy Birthday buddy...we miss you!) and Ely (We are cheering you on!) and all children with Batten disease. :) Mt. Rogers did not disappoint! Those on this hike: Bekah and Brad Murphy, Michael and Sarah Rich, and Tom and Lori Bowman.
Hike #2
Monday, June 5th: Old Douglas Mountain
Summit 4,600 Ft
In honor of Maya James
"Maya is very much a typical thirteen-year-old who loves Meghan Trainor and Taylor Swift. She loves to swim, rock climb, bike, texting with her friends, and the color pink. 4 years ago she loved running also. However of 2014, Maya was diagnosed with a rare neurodegenerative condition — a form of Batten disease called atypical TPP1 deficiency (aka SCAR7). As Josh Baxt writes in his article How to Survive a Rare Disease, "The word 'rare' hardly does it justice: ultra rare, hyper rare, twenty-people-in-the-entire-world rare?"
Presently, Maya needs assistance to stand and walk.
In May of 2016, the Jan and Dan Duncan Neurological Research Institute (NRI) at Texas Children's Hospital in Houston, Texas announced the commencement of a new research project to explore treatments for SCAR7. This project is dependent upon Maya’s friends and family for funding. There are three ways that you can help fund the research project at Texas Children's Hospital and raise awareness of SCAR7 and other rare disorders. The first is by purchasing a #FightingForMaya T-Shirt and the second is by donating directly to the SCAR7 research project at Texas Children's Hospital. The third way is to purchase an item from Maya's Collection." Words by Suzette James-Mom
Check out her page here! https://www.facebook.com/fightingformaya/
After hike summary: Again, another amazing hike! We certainly had some challenges. There was no maintained trail, so we blazed our own! We got quite the work out. But reaching the top was definitely rewarding. The views were incredibly beautiful. I never get tired of the views around here. And it was my pleasure to make the hike for Maya! Those on this hike: Bekah and Brad Murphy, Sarah and Michael Rich.
Hike #3
Monday, June 12th: Colville Mountain
Summit: 3,400
In honor of Nathan Hiltman
Stacey, Madison, Nathan, and Jay
"Nathan just turned 13 in March and we were diagnosed on June 10, 2015 when he was 11. It took us almost 7 years to receive a correct diagnosis. He is a very sociable, loving little "big" boy. He is 5'10". He is obsessed with anything to do with Star Wars. Always has been. We think it is because he remembers it and it is familiar to him. In the past 7 years we have watched him go from the soccer and basketball star to not being able to see and right now he can barely walk. He is in a wheelchair 95% of the time. He is having a hard time communicating with us. He speech has become harder to understand. We feel that we loose him inch by inch, day by day. It is the most unbearable pain so can describe. To know that your child is going to die before you is not even something I can put into words. Recently I had to watch my friends bury their son and it really got us to thinking. I had known Nathan had a terminal illness, but the reality set in. It was a "but there for the grace of God go I moment" for me. When I returned home things started to go downhill for Nathan pretty quickly. He went from walking with sighted guide to crawling because he was too scared to walk anymore. We are now facing an immediate remodel of our downstairs to be able to accommodate him. We have to immediately get my van modified or a new one. The financial burden is beyond tremendous. Both my husband and I work full time, so it is hard to get things done around the house as we want to spend time with him when we are home. Our prayer is a long happy life with him. Our mantra from diagnosis day has been "joyful, meaningful experiences". Pray that we honor his life and that everyone who knows him, loves him and that he will never be forgotten." Words by Stacey, Mom
After hike update: This hike was more of a climb! It was challenging in the sense that it was difficult physically. (even though the shortest elevation climb so far) But we persevered through and reaching the top was that more sweet! I loved having my family with me! This was for you Nathan!
Those on this hike: Bekah and Brad Murphy, Michael and Sarah Rich, and Danny and Bekah Bowman
Hike #4
Monday, June 19th: Thomas Mountain
Summit: 4,860 Ft.
In memory of Bentley Betts
"On July 2, 2010, my husband and I welcomed a healthy 8lb 11oz baby boy into the world whom we named William Bentley. Life seemed so perfect. Bentley met ever milestone on time and even some seemed "early". In 2013, we noticed that a couple of things seemed off. Bentley was starting to stutter with a couple of words that he once could say with no problem. As his parents we thought that maybe he couldn't hear properly because of all the ear infections he had previously. After seeing his local pediatrician, then a developmental therapist, and lastly another local pedestrian we were sent to a children's hospital for testing. All signs pointed to a muscular problems. In December 2013, we drove two hours to Le Bonheur children's hospital to see our first of many neurologist. I'll never forget thinking that everything would be fine and that maybe we were "over protective" parents. Little did we know that first visit to a children's hospital and meeting with a neurologist would be the first of many. During that visit we had an MRI and an EEG. The results from those test showed white spots on the brain and an abnormal eeg. But unfortunately the neurologist tried convincing us that everything was fine. From there we traveled to Vanderbilt in February 2014 and started seeing a new team of doctors. Life as we knew it would soon be turned upside down. Within the next 5 months we learned that our sweet, full of life, 3 1/2 year old would struggle. Bentley was having seizure activity that we couldn't yet see, his brain was shrinking, and his vocabulary was getting smaller. That summer seemed to go by so slow and life seemed to get a little harder. In August (2014), we flew to Boston Children's to get a second opinion. While there we had another round of test done & a 48 hour eeg. As we met with the neurologist and went over all the test, blood work, & told him everyone we had previously seen, he told us something I'll never forget. If we were to ever find out what Bentley had it would not be curable. At that point Bentley had been tested for 29 different diseases and all had come back negative. My husband and I left Boston somewhat determined to figure this out curable or not. In September we had blood taken and sent to Baylor in Texas for the Whole Exome Sequencing. On December 9, 2014, during a regular neurology appointment our world got turned upside down and forever changed in that very moment. Life as we knew it would never be the same, our sweet Bentley would struggle. He had a rare disease called Neuronal Ceriod Lipofuscinoses type 8 also known as Batten Disease. I remember leaving the doctors office that evening devastated but thankful we knew. We knew Bentley would eventually lose his vision, stop talking and walking, and require 24 hour care. The next couple of weeks were a complete blur. We made it to a new year/new month and were determined to live life to the fullest and give Bentley the best care we could. 2015 threw many more punches...January (a month after he was diagnosed) he stopped walking and talking, April he was placed in a wheelchair and we started physical and occupational therapy, September he failed a swallow study, & October he had a feeding tube placed. But through all that he was so happy, continued to smile. In August 2016, Bentley became very sick with the Rhino virus and up to this point we had no issues with respiratory problems. The next four months we went to Vanderbilt 2-3 times each month due to respiratory problems. Fast forward to March 2017.... the month we learned what true heartache was, extreme sadness, but happiness that our sweet Bentley wasn't suffering anymore and was able to live like a 6 1/2 year little boy should. On March 14, Bentley got sick with what we thought was the stomach bug but turned out to be the beginning of his stomach shutting down. March 21st, hospice was called in and we were told we didn't have much longer with Bentley. His body was shutting down, his stomach was rejecting fluids and medicine. We called family and friends in and opened our door to everyone. We had many visitors that week who poured their love and support out to us. On March 27th at 10:02pm our sweet Bentley took his last breath while I (his mommy) was holding him and his daddy by his side. Our brave little boy no longer suffers from that awful disease that once had ahold of him." -Laura Betts, Mother
After Hike Summary: When we crested the summit, we came upon thousands of blue wildflowers. We wore blue today as this was one of Bentley's favorite colors and the color used by his family to remember him. It was incredible. There had been no wildflowers up to this point. We had a challenge finding the trailhead. But once there, I found the entire hike so peaceful, beautiful, and the smell of fresh mountain air was awesome. Bentley, we know you are completely well and we rejoice in that.
Those on this hike: Bekah and Brad Murphy, Liz Wolf and Amy Knutson
Hike #5
Monday, July 3rd: Abercrombie Mountain
Summit: 7,308
In honor of Sam Engman
"Sam is a 5 ½ year old boy with Infantile Batten’s Disease (NCL1). Sam is a smiling, happy boy most of the time. He is the epitome of someone who smiles in the face of danger. He is also known to roll his eyes at his younger brother and to occasionally laugh when his brother gets in trouble. (Typical older brother). Sam especially loves music, hugs, and snuggle time. He also really enjoys spending time with his friends and family at church. Despite his illness, he is such a gift and blessing to us and many others.
We first started noticing that Sam had health issues at 6 months when we recognized various developmental delays. At 18 months, Sam had surgery to remove his adenoids and the recovery time that should have been weeks turned into months. It was around this time that we started to fear that something way more serious was going on and we started searching for a diagnosis. Around age 2 Sam started having painful, jerking movements. After what felt like an eternity, we finally received the news of Sam’s diagnosis that year. At around 2 ½, Sam had a surgery to give him a G-tube, which helped his nutrition and overall health tremendously. Around 3 years old, Sam’s seizure activity started to surface and increase and we started the journey of managing his seizures through several medicines. During the summer after he turned 4, Sam spent nearly the whole summer in and out of various hospitals due to new and different seizure activity. It was at this time that we added hospice care for additional support. He has been fairly stable since then, but we know that it only takes one cold, flu, pneumonia, or prolonged seizure incident to put him back in the hospital again. Each day is a God given blessing!
We’re thankful to BDSRA for the great support that they have provided. We especially appreciate the support groups, education/information, advice, and otherwise making sure that we have the resources that we need to love and take care of our child. This journey has been rough for our whole family but we trust in God and see the blessings that God gives Sam and our family daily. Please keep Sam in your prayers for continued health and comfort. Also, please keep our family in your prayers as we are about to add a 3rd boy to our family." Words by Sarah Engman, Mother
After Hike Summary: This hike was incredible! I said "wow" numerous times. This was a memorable way to end my hiking adventure. And would you believe it, the majority of the wildflowers we saw were Superman colors, for Super Sam! So cool. This hike was 8 miles and difficult at times. We crossed creeks, saw waterfalls, snow and stood in awe of God's creation. The summit was all rock and the view was worth every step.
