Michele Holbrook is an extraordinary woman who has faced unimaginable challenges throughout her life. Living with a rare genetic condition called neurofibromatosis, she has endured 75 MRIs, 11 surgeries, and the presence of over 100 tumors in her body, including three in her brain. This is her incredible story, how her condition has impacted her life, the challenges she faces on a daily basis, her treatment journey, and how her indomitable spirit continues to inspire others.

Living with Neurofibromatosis

When Michele was a 25-year-old new mom, she began experiencing some strange occurrences. Primarily, and most unnerving, was that her leg would give out on her from time to time. She’d be out walking and then boom – she’d suddenly be on the ground. A busy new mom, she ignored her symptoms as best she could for a few years, until finally she couldn’t ignore them anymore.  She visited an orthopedic surgeon, who found tumors on her spine. Shortly after that, Michele was diagnosed with a rare form of neurofibromatosis known as Schwannomatosis. This genetic disorder causes the growth of tumors throughout the nervous system. Unlike other forms of neurofibromatosis, Schwannomatosis is marked by the presence of internal and slow-growing tumors, which can cause immense pain and discomfort. With only one in 40,000 people affected by this condition, Michele’s experience is truly unique. (1, 2)

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The Invisible Pain

Although Michele appears normal on the outside, her body is constantly battling the invisible pain caused by the tumors that invade her brain, press against her spine, and crowd her lungs. She describes the excruciating pain she experiences daily, making even simple tasks a challenge. Michele’s condition has also affected her mobility, requiring her to seek special accommodations, such as bulkhead seats on planes, to alleviate the pain caused by compressed knees and spine.

“Anywhere there’s a nerve ending, one of these tumors can grow,” says Holbrook, now 57. “And you have nerve endings from the top of your head to the bottom of your toes.”

Personal and Professional Impacts

Michele’s condition has had a profound impact on her personal and professional life. She shares the difficulties of dealing with questioning stares, glares, and occasional hostility from others who fail to understand the effects of her condition. However, rather than letting these challenges deter her, Michele has shown remarkable resilience and determination to turn adversity into opportunity. She stays positive, and tries to turn moments of hostility into educational ones.

“I had a lady say to me one time, ‘Who do you think you are that you can pre- board?’ ” she says. “I look so normal on the outside that people don’t understand.” 

Advocacy and Fundraising

Motivated by her faith and an unwavering determination to help others, Michele has become a passionate advocate for children affected by neurofibromatosis. Through her advocacy efforts, she has raised over $90,000 for the Children’s Tumor Foundation and NF research. Michele’s relentless pursuit of a cure and her unwavering commitment to raising awareness have made a significant impact in the quest for a better future for affected children.

Despite her condition, she has run two full marathons, 19 half marathons, and has participated in countless other sporting events to raise money for the foundation. She says that it breaks her heart to see children born with this illness. This is what continues to motivate her to push herself, despite the pain.

“When you see children born with this, it’s heart-wrenching. I’m of the age where I can handle it, but I never want a child to go through what I’ve gone through.” 

Treatment Journey

Michele’s journey has not been easy. Since her diagnosis, she has undergone 75 MRIs and 11 surgeries to remove the tumors. These surgeries have ranged from extracting tumors from her spine to removing tumors from her lungs, which required the removal of ribs. Unfortunately, the tumors have a tendency to return, leading to continuous treatments and surgeries. In 2018, she endured 36 radiation treatments to shrink a tumor near her brain stem.

“Does NF shorten my lifespan? Of course it does. Living with three brain tumors, you don’t know what will happen. Do I focus on that? Of course not. I can’t spend my time thinking about it.”

Lifestyle and Lifespan

Living with such a complex and challenging condition naturally raises questions about longevity. Michele acknowledges that her lifespan may be affected by the presence of brain tumors and the uncertainty they bring. However, she refuses to dwell on this aspect and instead focuses on making the most of every day and the positive impact she can have on others’ lives. Her active lifestyle, including participating in marathons and rowing challenges, has become her way of proving that a body in motion stays in motion.

“People don’t understand how I still run or exercise. But a body in motion stays in motion. I know how to handle my pain.”

Michele’s Legacy

Michele’s incredible strength and unwavering faith have been the driving force behind her journey. She draws inspiration from a Bible verse, which encapsulates her belief that even in the face of adversity, there is a higher purpose. Michele, who tragically lost her son to addiction, has used her own pain as motivation to create Chandler’s Hope, a non-profit organization dedicated to helping the homeless.

Never Lose Hope

Michele Holbrook’s story is one of resilience, hope, and unwavering determination. Despite living with 100 tumors, including 3 in her brain, she has not allowed her condition to define her. Through her advocacy, fundraising, and refusal to let pain hold her back, Michele continues to inspire others and drive towards finding a cure for neurofibromatosis. Her courageous spirit serves as a reminder that even in the face of insurmountable challenges, one can find purpose and make a positive impact on the world.

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