Case Study #86 - Lars Responding to Messages

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Lars Roeyen (1997-2014) 

Lars lived in the city of Genk within the region of Limburg, Belgium. He was born with a predisposition disorder. When he was 2 years old we noticed that his fine motor skills showed some defects. An MRI showed something but it was not clear and was not looked into further by the attending pediatrician. Kinetic therapy was recommended. Then suddenly at the age of 16 he got a bump on his head that the doctor thought was a fat bump. Lars was disturbed by this bump and he was bullied with it at school. A cardiovascular surgeon removed his bump under local anesthesia and saw that it was attached to the nerves. She immediately made the link at NF and a new MRI showed that he had one tumor in the brain stem, one on and a larger older one outside. In total he had 19 tumors spread on the spiral cord and face. He walked into hospital for an urgent brain operation and came out with paralyzed hands and legs.TV and Facebook were his only outlet and even with this he needed help. Despite all this he remained optimistic with an indescribable humor. On  November 1, 2014 he said goodbye to us with a very scared heart about what was to come. 

NF changed the lives of his family forever. He wanted to be famous for 1 day and he succeeded. He was invited on Q-Music which is a famous Belgian radio station. While the family was there the big boss saw him and asked to follow Lars for the rest of the day to make a newsflash. The man onthe radio station broadcasted to the people listening to write Lars cards while he was in the hospital. He got about 4,000 cards in the rehabilitation clinic and also at home. There were even people who sent the family some money for a drive with the special cab. (This was very expensive! Lars never left home for the rest of his days after it.) Lars got letters from all over the world including the queen and king of Belgium as well as their army. His sister, who is three years older, was his mainstay, nurse and best friend as well as his dog Pepa who rode everywhere on the rock chair. Lars was a NF2 warrior.

Case Study #85 - Tommy Showing the Way

"Tommy Showing the Way" Oil on Canvas. 30" x 24"

Thomas A. Dobbin aka the Mandalorian (1980 - 2012)

Tommy was diagnosed with Neurofibromatosis (NF) when he was just six months old. The telltale sign that led to this discovery was a café au lait spot on Tommy's young body. Even at a young age, and with very little knowledge of NF, Tommy accepted the challenge that his life offered. Tommy’s NF slowed his progress down, but never stopped him, because “that was the way” (The Mandalorian). Tommy's head was slightly larger than most due to a dormant tumor in his head. When Tommy hit puberty, his NF kicked into high gear with visual lumps on some spots of his skin, as well as inside his chest cavity. As Tommy struggled with growth from boy to man, he also battled with his peers noticing 

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that he was different in speed, education, and motor function skills but smiled it off, because “that was the way.” It was this same smile that won the hearts of so many that encountered Tommy and is the same reason why he had the backing of his High School Basketball team to make a basket but was unable to. During his senior year he found out that some of the tumors inside his chest were on his lungs, but that same year he made a basket during a game and had the whole crowed cheering and standing.

After high school, Tommy struggled with learning how to drive so he walked everywhere. This is right about the same time when his NF stared to provide Tommy with additional problems. Tommy had one of the tumors on his lung cause a bleed that resulted in the removal of part of his lung. In Tommy's prime he suffered the same bleed on the opposite side, but this time the result was it stopped without having to remove part of that lung. Despite his medical struggles, Tommy met the love of his life, Tiffany, and they were married. They were blessed with two children, a boy and a girl, who were fortunately not born with the same genetic disorder. Tommy knew he could collect money from the state for his medical issues but chose to work and provide for his family as a cart pusher all while walking to work each day, because “this was the way.”

In his 30’s Tommy NF progressed to a point where the tumors wrapped around the organ that so many loved, his heart. Tommy started to struggle more with work and daily tasks. In an effort to slow the growth of the tumor wrapping around his aorta, Tommy went to a Manhattan hospital to receive a drug to slow the growth. Unfortunately, the treatment was cut short as he lost his battle to NF two months later at the age of 32. Until the end, Tommy continued to work, be a great father to his kids, a doting husband, and a shining beacon to all that witnessed his drive and smile, because “this was the way.” Tommy loved to cook, the outdoors, his family, all walks of life and just that, LIFE. Tommy’s motivation to live life to the fullest is a reminder to all that met him, because “that is the way.”

Case Study #84 - Laurie Sewing a Baby Bib

"Laurie Sewing a Baby Bib" 30" x 24" Oil on Canvas. 2020.

When Laurie was born in 1973, the doctors noticed cafe au lait spots, one of which was wrapped around her torso. They also noticed small tumors on her left buttock, and one on her right leg. After a few months the doctors told her parents the news. Laurie had Neurofibromatosis type 1. The doctors knew very little and assumed her life was going to be short and painful. As she grew the signs of NF1 became more apparent, Laurie spent many nights sleeping with her parents begging for them to stop the pain. They wanted to but they couldn’t and the doctors didn’t know how. As Laurie grew her parents noticed that her legs were different lengths and she had developed a major limp. Once the doctors knew the difference in the length, Laurie had to have a lift built on the bottom of her right sho

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When Laurie was eight she went to John Hopkins Hospital in Baltimore, MD where she had the first of many surgeries including the debulking of a plexiform tumor in 1981. Laurie would continue to have many surgeries to debulk and remove tumors. Those tumors are and have returned, getting them out completely is never going to happen. As a school girl, learning was a challenge. Laurie struggled to make friends and would be bullied daily from classmates. She was constantly reminded of how stupid she was and when Laurie couldn’t pass a test it was a reminder. In physical education classmates would never want her on their team. During PE class the other classmates would end up throwing/kicking balls that would purposely hit her where the plexiform tumors were. Teachers never really seemed to care. 

Laurie hated school. She wanted out so badly. Laurie graduated high school and went on to earn two associate degrees, through a local community college. As an adult Laurie has had to continue to have surgeries, some of been pretty challenging to recover from, but she has learned to manage. Because the risk that the plexiform tumors may become cancerous, routine MRIs are normal, but now she is used to having them that she can easily sleep through them. Daily life is filled with chronic pain, some days it’s rough but getting up and facing the day is important. 

Laurie has spent 28 years in the classroom, the first five years she worked in a child care center as an aide for infants through 2 year olds. The second five years she was in charge of fifteen two year olds and 2 assistants. She loved those little children and found that age to be entertaining and challenging. The last eighteen years she has been an instructional kindergarten assistant which was her calling. These past eighteen years have been wonderful for her, despite being in severe pain all the time. Her job has been her happy place. Those kids have given her a purpose, a reason to actually want to get out of bed, and a reason and a purpose to keep up the fight.

Case Study #83 - Michaela Ringing the Bell

"Michaela Ringing the Bell" Oil on Canvas. 30" x 24" 2020.

Michaela was born in Rome, New York. No one in her family had NF and it was only discovered during a routine wellness exam at the airforce base that her dad was stationed at in Texas. The doctor looked at her skin and asked her if she knew she had it. She did not.

Growing up, Michaela enjoyed learning German and enjoying those traditions as her father met her mother when he was stationed in Germany. She has two younger brothers. One is now a dentist and the other a real estate broker. She has lived in Albuquerque, New Mexico and has lived in South Carolina since 1995. She has one son who is does not have NF and will be graduating soon from Winthrop University.

Michaela has had to have some of her NF tumors removed and more recently has battled both sta

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ge 4 breast cancer and brain cancer during her adult life all within the span of less than two years. While NF doesn't necessarily cause breast cancer, those with NF have a five times greater chance of hav

ing it compared to the unaffected population (per information from the National Institute of Health). Michaela just recently finished her last round of radiation for breast cancer which was #53. Earlier in the year she had to have gamma knife surgery for her brain cancer. She receives her care at the Medical University of South Carolina. Prior to battling cancer, Michaela worked as an elderly caretaker and loved it. The constant toll of being on chemo and radiation leaves her feeling fatigued quite often. Michaela loves kayaking, yoga, movies, music, travel including cruises, swimming, drawing, reading and going to the beach along with tai chi gi gong meditation.

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

"Courtney Preparing the Panda Warmer" 30" x 24" Oil on Canvas.

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.

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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.