Case Study #82 - Dorothy Enjoying Reggie's Sweet Potato Pie

"Dorothy Enjoying Reggie's Sweet Potato Pie" Oil on Canvas. 30" x 24" 2020.

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Dorothy Bibbs is Reggie Bibbs's mother. (Reggie was the first oil painting I did in 2012.) Dorothy is the youngest in her family and did not know she had NF until her youngest son Reggie was diagnosed. Her NF was caused by a spontaneous gene mutation as no one else in her family has it. She did not even realize she had NF until Reggie was born as she had no real signs or symptoms growing up.

Dorothy has two daughters and four sons, two of the sons have sadly already passed away. Along with everyone else, Dorothy enjoys her son's baking prowess and Reggie enjoys baking her favorite deserts which include both carrot cake and sweet potato pie to name a few.

Currently she and Reggie live together in Houston, Texas and enjoy having the family all come over and visit.

Case Study #81 - Donna Capturing the Scene

"Donna Capturing the Scene" Oil on Canvas. 30" x 24"

Donna was born in 1960 and grew up in South Dakota. Donna has had problems with coordination her whole life but, she was not diagnosed with NF until adulthood. Her mother, Patricia, had been diagnosed with what was then called Von Recklinhausen’s Disease as an adult as well, after she had a large tumor removed from her arm and the pathology report came back. The rural doctor did not know much about it, He also said any of her children who had light tan birthmarks “might get a lump or two some day,” but that is was only a cosmetic concern and nothing to worry about. Her mother, Patricia died of kidney cancer at age 49, in 1985, but doctors at that time did not seem to think it had anything to do with her earlier diagnoses. (Later it was determined that it probably did.)

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Donna had the CALS since early childhood and started getting a few lumps as a teenager. but she still could not get a proper diagnosis until she was 41 when a doctor sent her to Mayo Clinic in Rochester, Minn. During that visit, doctors discovered bilateral pheochromocytomas (tumors on both adrenal glands) Pheos are uncommon, but more common in people with NF. They can cause a lot of serious health issues if not found. She had successful surgery for the adrenal tumors 19 years ago. She will be 60 this year, and has had a steady increase in tumors over the years, but still has a fairly mild case, She has two grown children who did not inherit NF. Although she did not attend college, she has had a long-time photography hobby, and enjoyed writing. She started working as a reporter-photographer at her small town newspaper at age 50 and eventually became editor. In her spare time, Donna likes photographing the wildlife in her area.

Case Study #80 - Courtney Preparing the Panda Warmer

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Courtney Willoughby is a Registered Nurse living with Neurofibromatosis Type-1 (NF1). She was diagnosed after developing shingles at the age of 3. She is the first in her family to live with this condition.

At the age of 13, Courtney was diagnosed with a hypothalamic-pituitary brain tumor. She was also diagnosed with scoliosis, hypopituitarism, growth hormone deficiency, a skeletal rib deformity, chronic headaches and tumors were found in her abdomen, pelvis, arms, legs and ear. Courtney found all of these diagnoses incredibly overwhelming, and feared judgment and ostracization from her peers at school. This caused her to keep her condition a secret, as she feared her peers would reject her once they found out she was “different”. This fear caused Courtney to develop anxiety and depression, which ultimately led her to develop a severe eating disorder. Her mental health spiraled out of control, as she continued to hide her struggles from her peers.

Courtney did not reach out for help until her last year of high school, when she had the opportunity to meet Reggie Bibbs at an NF conference in Calgary, Alberta. This was a life changing experience, as she saw that it was possible to thrive with NF, and that there was an incredible community of people there to support her. After she told her friends and peers about her struggles, she was able to raise close to $15,000 for NF research and dedicated her funds to the Friedman Research Lab in British Columbia. She also helped develop a not for profit organization called The Alberta Tumour Foundation.

In 2016, Courtney graduated with her Bachelor of Science in Nursing degree (BScN), and currently works in labor and delivery helping bring new life into this world. Courtney was inspired to become a nurse after one of the nurses she worked closely with in her neurosurgery clinic recognized that she was struggling with an eating disorder and urged her to get the help she needed. Up until that time, Courtney’s eating disorder had not been addressed by medical professionals, and having this nurse recognize her struggles was like lifting an enormous weight off her shoulders. Courtney was determined to become a nurse after this experience so she could make an impact on patients like this nurse had made on her.

Today Courtney is relatively healthy. She is “weight restored” from her eating disorder. She has had 3 different surgeries to remove tumors, and is on several medications to control her hormone imbalances. The biggest issue she faces is controlling the pain resulting from her chronic headaches. She is getting married in September 2020, and is living life to the fullest. Her current hobbies include hiking, kayaking and anything that gets her outside in the mountains. She urges anyone living with NF to reach out to the wonderfully supportive NF community! It truly saved her life.

Case Study #79 - Cher Packing Lunches

"Cher Packing Lunches" Oil on Canvas. 30" x 24" 2020.

Cher Miles who is originally from Salisbury, Maryland found out she had NF when she was 11 years old. She is the youngest with two older sisters and brothers. Her sister took her to the doctor as her parents had passed away. She is the only one of her siblings to have NF. She isn't sure if it was passed down or if it is a spontaneous gene mutation. Her sister took her to the doctor because of the growing tumors on her arm.

There were two tumors in particular on her arm that were giving her problems. Eventually, Cher had to have her first surgery to take care of them. She was in middle school when it happened and the kids teased her about the tumors. Many of the kids would ask what happened to her not realizing it was a genetic disorder. Some people still ask her that question as an adult. These questions along with the teasing from her childhood left her with low self esteem. 

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In 1996 she got married and in 2000 moved to Port Wentworth, Georgia. She has three daughters and all three also have NF but with different symptoms. Her daughters seem to take it in stride and don't really complain and do not let it affect their outlooks.

For a long time, Cher worked in the food industry in a nursing home facility but recently switched to working in the food industry at a K-8 school. She did this to be on the same schedule as her niece whom she is helping to raise. Cher's low self esteem faded as an adult and she came to realize that others had NF much worse than her. She learned to be grateful that her NF was not nearly as bad as it could be. She still admits that she doesn't like the tumors and doesn't like to wear shorts and is self conscious of the tumors on her arm, but doesn't feel that it is too bad. She spends her time learning new recipes and keeping up to pace with preparing meals for those kids who still need their lunches even during this time of online learning due to the pandemic.

Case Study # 78 - Cindy Making Homemade Runzas

"Cindy Making Homemade Runzas" Oil on Canvas. 30" x 24" 2020.

Cindy Lindsey was born Feb.18,1967 in Sidney NE. School and home life were a constant struggle due to the fact that she was suffering from unknown petit mal seizures. Thanks to a few caring elementary school teachers spending many days after school with her she maintained average grades. Junior high and high school were difficult with a lot of struggles. During this time her parents took her to several specialists each time being told several different things ranging from that there was absolutely nothing wrong except that she was a little slow and a daydreamer who would eventually catch up to that since she did not crawl as a baby this would always hold her back. Never once did the specialists do anything beyond giving a complete physical and running motor skills tests.

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Being told she was nothing more than a daydreamer really discouraged her and ignored the fact that she had petit mal seizures. Cindy was often teased because of the many birthmarks she had on her skin, and how she liked to daydream but she learned to ignore it and just do her best.

As a teen Cindy taught kids beginning swim lessons including how to float. This was one of her favorite activities in addition to riding her bicycle. She could do either for hours just by herself. She graduated high school and worked as a dishwasher in a small local café where she fell for her first husband and gave birth to her first child, still not knowing that she had NF. Being from two completely different worlds the she and her husband divorced after eighteen months.

Cindy went on to college to make a better world for her and her daughter. During this time she met the love of her life, Gus McGee, and married. This union brought to them the birth of their son. After graduating college with honors which was a pleasant surprise she took a year to be home and to take care of their son. Later she went to work at Cabela's and stayed working there for 27 years.

While at her husband's doctor appointment the doctor looked at the tumors in her hand and took her case history including the freckling and café a luit spots. This led to a lot of testing and her first surgery for NF. It finally answered a lot of questions as to why she had all these birth marks and deep tissue tumors that she had been told throughout her life "were nothing to worry about". At this time she was 30 years old. After the shock wore off she had her children tested: her daughter was positive for NF and her son was not.

One thing that really disappointed Cindy was the fact that after several years of running her from one doctor to another is the fact that her mother did not live long enough to find out that there was a reason her daughter had struggled so hard and that there was a clinical diagnosis. Cindy lost her mother at age 24. Several years later her grandson was born with many outward NF signs and she fought for his testing. While it took arguing with the pediatrician, they were finally sent for genetic testing and he was diagnosed with NF at 2 years of age.

Cindy went on believing that she was a genetic mutation and the first in her family to have NF until her maternal grandmothers death in 2017 where she met a third cousin who also had NF and that rocked their worlds: her grandmother and Cindy's grandmother were sisters so they both found out they were 4th generation because for both of them being the same age and their grandmothers being sisters for both of them to be genetic mutations the odds would be astronomical.

Cindy is never afraid to speak up about her disorder and will tell anyone who will listen about NF. She lives in a rural area but is very vocal and even on her bad days she keeps saying that she will not let this beat her, even to the point of refusing help when she really needs it. She is learning to accept help when needed but with lots of stubborn pride, that is when she needs to be reminded that this is an opportunity to teach someone about NF. She has never found a person who did not want to know more.

Case Study #77 - John Spinning Tunes

"John Spinning Tunes" 30" x 24" Oil on Canvas. Copyright 2020

John was born June 1997 in Lincoln, Nebraska and is the oldest of four. He was diagnosed with NF1 when he was 5 years old and is the first in his family to have neurofibromatosis. John lived a pretty “normal” childhood until the age of 8 when he experienced severe nerve pain on one side of his face. This led his doctors to discover a tumor on his brain stem. This was not a fast growing tumor, but it was a tumor in a very critical area. His life then changed to anything but “normal”.

John’s new reality was days spent at the hospital, at doctor offices, needle pokes, blood draws, MRI’s, and dealing with intense nerve pain. It then progressed to several brain surgeries, years of chemotherapy, more MRI’s, countless needle pokes, feeling sick and participating in research. He missed out on a lot, including school and school functions, birthday parties, and playing sports. He did not complain, and pushed through everything with a great attitude and perseverance. He was strong, brave and amazing. This tumor cannot be removed. It will always be there. If it remains stable, that is awesome. If it starts to grow he will need further treatment. John’s last surgery was when he was 15 and since then his tumor has been stable.

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NF has taken a lot away from John, but it also provided some amazing experiences and connected him with lifelong friends. He has attended NF camp in Utah, and met other NF heroes from around the world. He has participated in fundraising and awareness events at the Daytona International Speedway and the Lincoln Marathon. He was chosen to go on a Circle of Friends trip to Wisconsin and Florida with several NFL players and other kids who were on chemotherapy. These trips were sponsored by former Husker Grant Wistrom, Jared Tomich and other NFL players. John went on a Make-a-Wish trip and chose to go to Legoland in California. He was active in Boy Scouts and earned the rank of Eagle Scout when he was 16. John is close to receiving a Bachelor’s Degree in Business Administration and works full time at Super Target. He loves listening to music, going to concerts, traveling, and spending time with his dogs and family.

Case Study #76 - Candice Preparing the EKG

"Candice Preparing the EKG" Oil on Canvas. 30" x 24"

Courageous and beautiful Candice is a lifelong survivor of NF. Born with a Neurofibroma facial tumor in 1969, she underwent over 30 surgeries to re-reconstruct her face. Recovering from those surgeries trapped under tight bandages were a hot muffled prison of pain. Healing meant embracing a face with new scars and stitches to manage a disease and move towards a symmetrical appearance. Loving herrself during such an extensive healing process was an effort of enormous physical and psychological endurance. It was during one of these times Candice began documenting her experiences and has been journaling about it for over 35 years. Instead of becoming bitter and angry at her circumstance it fueled an unstoppable passion for life and compassion for others. She has said many times that being born different is one of the truest tests in a human’s capability to love. The impact of Neurofibromatosis doesn’t define her but is a catalyst for her purpose driven life. Candice has used her life experiences as a patient to become a dedicated ER Nurse, inspirational speaker, triathlete and self proclaimed joyologist.

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Throughout her life she has dealt with ridicule from looking different and multiple challenges at times being temporarily blind and unable to speak. Despite what would be considered a life of painful suffering, Candice is one of the happiest humans on the planet. A devout Buddhist, Candice began meditating at age 14 to deal with pain caused by Neurofibromatosis. She often visualizes yoga asanas while in MRI machines where she’s had to lay for hours without moving. Her daily routine includes plant based nutrition, walking and yoga. She now shares her life experiences with adults speaking at schools and conferences bringing awareness for Neurofibromatosis and sharing healthy life strategies. 

Candice joined the efforts of the Children’s Tumor Foundation as a triathlete with the NF Endurance team and team captain for the Cupid Undie Run to continue efforts to support funding to cure. Her goal is simple, to leave behind a legacy of hope for children to not have to endure a life of surgery. That opportunity presented itself as Candice has also undergone diagnostic testing and donation of tumor tissue to progress towards a cure. She has spoken at many craniofacial conferences for All Children’s and Moffit Research Hospital in Florida. Candice’s energy and compassion continues to expand with her launch of the I am Beautiful, Some Assembly Required inspirational clothing line in 2019. “The message is that we are all under construction in some way physically or emotionally. Loving yourself through whatever process you are in is a key to self awareness and positive esteem.” Her goal and mission continues to help others accept themselves for who they are and propel research for a cure forward.

For more information please visit www.buttefflychallenge.com