Case Study #66 - Michael Perusing the Menu

"Michael Perusing the Menu" 2019. Oil on Canvas. 30" x 24"

As a young child with Neurofibromatosis, it took Michael longer to learn to walk and talk. When doctors pushed Michael’s parents to institutionalize him, the principal and kindergarten teacher of his local elementary school encouraged Michael’s parents to enroll him in mainstream school instead. Michael was thankful they did because despite his disability, he went on to prove the doctors wrong, learning to walk and talk…just in his own time. The elementary school was small and Michael loved it. Everybody knew everybody and in a way everyone kind of looked out for each other. This was important to him because even though he always felt a little different he was never treated any differently.

Michael’s junior high and high school years were a much different story, however. In between multiple surgeries and medical procedures his parents divorced. His dad moved out and his mom never remarried. She stuck with Michael through all of his medical procedures and appointments. She was by his side everyday as he was bullied and tormented throughout junior high and high school. 

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Throughout his adult life Michael has had many surgeries and scans to monitor his ever-progressing NF. With the compassion of medical staff, therapists and others, Michael has worked numerous jobs until he finally found his niche working with adults with disabilities. Michael became an advocate for those adults and their families by helping them navigate the complexities of government programs. In 2012 Michael met his future wife in a Facebook support group for people with NF. Her name was Stephanie and she sent him cookies with little notes in them sometimes for no other reason than because he was having a bad day. Michael fell in love. Having NF herself, Stephanie understood and was empathetic to his needs. She never did get to officially meet his mom but he knows she would of loved her as much as he does. Michael is now a step father of a 17 year old talented and beautiful young woman. Being a parent is something he always dreamed of and now it is a reality.

Both Michael and his wife are very active with NF Midwest and attend their annual walks and fundraisers.

Case Study #65 - Jen Backpacking the Countryside

"Jen Backpacking the Countryside" 2019. Oil on Canvas. 30" x 24"

Jen was diagnosed with NF1 at the age of thirty. When her step-mother convinced her to see a dermatologist due to the numerous “bumps” she had on her chest and back. The dermatologist took one look at her and told her she had Neurofibromatosis. The dermatologist told Jen that she could go home and google information about NF or she would refer Jen to a neurologist. Knowing what google can tell a person Jen went to see a neurologist which confirmed the diagnosis of NF and led to another diagnosis. The neurologist sent Jen for multiple MRIs including one of the brain. The MRIs showed multiple tumors down her skull, spine, and tailbone; but, the most shocking was a 2-cm mass that was found on the pituitary in the brain. This type of tumor causes Acromegaly, which is something completely separate from NF and having both is extremely rare.

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Growing up Jen knew she was different from others including her siblings. She remembers going to different classrooms to learn and take tests. She recalls a teacher telling her that college might not be in her future. With determination, perseverance, and strength she not only went on to college and obtained her bachelor’s degree. Six years later she went back and graduated with her master’s degree, all while learning of her NF diagnosis, she earned her master’s in elementary administration and teacher leadership and graduated with a 4.0. Jen is an elementary educator and has taught many grades, was an instructional coach, and recently started teaching physical education. Her most memorable years of teaching were the two years she taught overseas in Dubai. After learning of her NF diagnosis and having brain surgery to remove the tumor from the pituitary, Jen told herself life is to short and packed 3 suitcases and moved to Dubai for two years.

Jen enjoys traveling, working out, and spending time with her family and friends. She has traveled to over 15 countries and is looking to fill her passport before it expires in the next couple of years. She works out 5 to 6 days a week and considers her gym family as another family that she can lean on for support.

Jen use to be scared to share her story, thinking no one would be interested in hearing about it. Once she realized the importance of sharing her story she has shared it over and over again. In February 2016, Jen was living in Denver and with the support of her family and friends they did their first Cupid's Undie Run altogether.

Currently, Jen is living in Kansas City and is involved with the NF Central Plains chapter. She is looking for more ways to be involved with raising awareness, finding a cure, and the fight against NF.