HIKE HONOREES
We hike in honor of those brave warriors who have lost their battles with histiocytosis, those who have conquered the disease, those who are still fighting, and those who have yet to be diagnosed.
As a participant of Histio Hike Shenandoah, you can choose to submit information about the person you are hiking in memory or in honor of; this information will be available on our virtual wall of Hike Honorees as well as posted during the hike weekend.
Once you are registered, please email the Association's Fundraising Department at events@histio.org with a short story (about 200 words) and photo of your warrior. If you are the Team Captain, please ensure you complete this information.
2025 Honorees
Ian was 11 months old when we noticed a mysteriously swollen lymph node in his groin. After 5 months of tests and scans we finally knew the cause when a biopsy revealed he was suffering from Langerhans cell histiocytosis. Read more of Ian's Story.
At 7 years old, Deanna was diagnosed with LCH, after the disease caused her vertebrae to collapse and eroded a bone in her upper eyelid. It started as pain in her lower back, that progressively grew worse where she couldn't walk unless her hands were on her knees. Read more of Deanna's Story.
Samantha felt a hard notch on her skull on her 41st birthday in 2023. In just 12 days, it had grown into a bump that was causing extreme discomfort. She went to the hospital at 2am begging the doctors to remove it. At the emergency department, a CT identified a lytic lesion which had eaten through the bone. Read more of Samantha's story here
Hudson: My name is Hudson and I'm six years old. When I was a baby, my mom found a lump in my groin. After several trips to the emergency room, blood draws, and ultrasounds, I had surgery at eight months old to remove it because it hurt. Read more about Hudson's story here
Dennis: When I was 10 years old, my brother broke my back while we were wrestling. They weren’t quite sure at the time as to why it broke so easily, but the entire T6 vertebrae was shattered.
Josh: My journey has been an unexpected one to say the least. It started with some severe headaches over the summer before my senior year in college. A neurologist ordered some tests which led to phone call telling me to go to an emergency room right away. Click here to read more about Josh's story
Thomas Anthony Maurer was our honeymoon souvenir. He was a beautiful ten pound bouncy baby boy with a full head of hair. He’s arrival was much anticipated as the last grandchild born on either side of our families had been seven years ago. It seemed as if life couldn’t get any better. So many new and exciting things were happening for us. In a span of nine months, we became husband and wife, bought a house, and had a baby. While away for Thanksgiving in 2007, we noticed Anthony not acting like his usual self. Click here to read more about Anthony
Duncan: The first time we suspected that something was wrong was when Duncan, an otherwise healthy 10-year-old, complained of severe neck pains for 2 weeks. Our lives were forever changed when an emergency MRI revealed a mass on his cervical spine. After a biopsy, the verdict was in: Duncan had Langerhans cell histiocytosis. Click here to read more about Duncan's story
Charlotte: We noticed a large bump on Charlotte’s head last summer and,
after some tests and conferring with a dermatologist, we were referred to a
neurosurgeon due to the proximity of the ‘cyst’ to her soft spot.
What we thought was a cyst, surgically removed from her head in November 2024,
turned out to be histiocytes where they shouldn’t have been. After numerous visits to
Novant Health and St. Jude’s clinic getting ultrasounds, blood tests, x-rays, and more,
we were relieved to finally receive a diagnosis this past January:
juvenile xanthogranuloma (JXG). Click here to read more
Hank: I am a rare disease cancer patient. I have Histiocytic Sarcoma and I am
currently being treated by the Mayo Clinic in Rochester MN. I was initially
misdiagnosed in 2019 by the local medical facility and fortunately, with the
recommendation of my primary care physician, I was referred to the Mayo
Clinic, Rochester, MN. My treatment is still on-going. I have complete trust
and faith in Mayo Clinic. Click here to continue reading about Hank
Katie: When Katie was 11 years old, she began having excessive thirst which led to drinking and urinating constantly. After one year of symptoms, Katie was finally diagnosed with Diabetes Insipidus in September 1999. Her endocrinologist ordered an MRI to reveal that Katie had a tumor wrapped around her pituitary gland. Katie underwent a brain biopsy to determine that it was Langerhans Cell Histiocytosis in October 1999. Click here to read more of Katie's story
TJ’s journey with Langerhans Cell Histiocytosis began in January 2012 after developing a severe cradle cap like rash on his scalp. It wouldn’t be until October 2012, shortly after TJ’s second birthday, that our journey would have a name: LCH. After months of battling the rash, random fevers, and colic like episodes, a diagnosis was made revealing LCH of the skin, bone (skull), and blood. TJ spent multiple months in the hospital receiving chemotherapy treatments with multiple relapses (bone tumor of his right leg) and removal of his spleen.
When LJ was only three months old we discovered tumors in his lungs, brain, and spine. Multiple scans and surgeries later he was diagnosed with ALK positive histiocytosis, a rare form of an already rare disease. He faced three years of chemotherapy and many more scans, surgeries, and hospital stays. His future was frighteningly uncertain. Click here to read more about LJ
