Case Study #72 - Júlio Enjoying the Afternoon

"Júlio Enjoying the Afternoon" Oil on Canvas. 2020. 30" x 24"

Born in Brazil, Júlio César is a 33 yr old man currently living in Mateus Leme. Júlio was 6 months old when he was diagnosed with NF1. He is one of 5 kids including his 4 brothers and sisters. Júlio was adopted so he is not sure if his birth parents had NF or not.

Prep Sketch

Júlio does not have a job and currently lives with his mother who takes him to his various doctor appointments since he cannot drive. He has had about twenty surgeries due to his NF, mostly when he was younger. These took place in Rio De Janeiro. Now he goes to the NF Clinic in Minas Gerais. His doctor, Dr Luiz Osvaldo studies NF treatments in the United States to keep current. Júlio is apart of a NF group in Brazil mostly online through a WhatAp group.

Because of NF, Júlio was born without his left eye. Having just one eye is something he is used to now, so it doesn't really bother him. Besides the large plexiform tumors on his head, he also has small tumors covering his body. He also has a plexiform on his arm as well as his belly and back. The doctor is concerned about the tumor on his arm but is waiting to see what happens.

Júlio likes to travel. His favorite place to go to is the beach often especially in the town of Guarapari. He says that he has a nice quiet life.

Case Study #7 & #71 - Henry Checking the Weather

2019 ~

6 Years have passed since I completed the original painting. I was fortunate enough to have an exhibition at the Albrecht-Kemper Museum of Art in St. Joseph, Missouri this year. I've been exhibiting this painting around different venues since I painted it. After 6 years, my son is no longer a 4th grader with a pocket weather alert system. He is a sophomore in high school who would never wear a plaid shirt and he hates wearing jeans as well. He typically only wears long sleeved t-shirts of

 his favorite teams (KC Chiefs being his all time favorite). I wish I could say that he wears a coat when there is snow out on the ground, but he goes without whenever he can. He uses his phone to check the weather now. He has not changed his mind about his vocation as he still wants to be a meteorologist. The new sketch simply reflects the same theme, but is much more who he is today.

Case Study #70 - Mike Fixing the Truck

"Mike Fixing the Truck" Oil on Canvas. 30" x 24" 2019

Michael Williams was born in July of 1987 in Tyler Texas. When he was born he had the classic cafe au lait spots but very few dermal tumors. At the age of 2 1/2 Michael was initially diagnosed with NF1 which was later confirmed by specialists in Houston Texas. His was a case of NF being due to a spontaneous gene mutation as no one else in his family has it. Michael struggled in school with making friends and with certain academic classes. He graduated high school from Gladewater Texas in 2006.

Mike Fixing the Truck - Prep Sketch

In 2012 he married the love of his life who saw past his NF and encouraged him to start his own advocacy. Several years ago, Michael had several dermal tumors on his chest removed and is thankful that he has not had to have any other NF related surgeries. In 2017 Michael and his honorary sister Amber who has a son with NF hosted a donation based bake sale with all proceeds going to the Children's Tumor Foundation raising over $5000. In 2018, Michael and his family moved to Cheyenne, Wyoming where they currently reside and plan to continue raising awareness and hosting charity events to benefit NF and support families affected by it. They tried to participate in the 2019 Cupid's Undie Run and fundraised for it, but unfortunately Michael's truck broke down enroute making this painting even more relevant!

Case Study #68 - Rachael Driving the Boat

"Rachael Driving the Boat" 30" x 24" Oil on Canvas. 2019

Rachael Crosby was two years old when she was diagnosed with NF1 due to a spontaneous mutation. She passed it down to her two sons: Dawson and Ashton. NF caused her to be in speech therapy until the 4th grade. She had a very large plexiform removed from her inner thigh when she was a teenager and also a large fibroma removed from the bone in the shin when she was a child. She has had several fibromas removed from her abdomen and back. Rachael has had to have multiple surgeries where fibroma covered organs have been removed such as her gall bladder, tonsils and appendix. The PCP has told her that they believe her organs failed faster due to the NF. Rachael also has battled cancer once before and had to have a full hysterectomy at age 23 because of it.

Prep Sketch for "Rachael Driving the Boat"

Rachael wishes she didn’t have NF but tries to stay as positive as she can being as active as she can be. Her motto is “I live for today because tomorrow isn’t promised to anyone.” She loves fiercely and fully as she always knows there is someone else worse off than her. She tries and makes the best of everyday and tries not to sweat the small things. She always over analyzes before speaking when upset because she does not want the words she says to possibly be the last words someone hears or be the last that she possibly says.

Her son Dawson had ADHD, ODD and Dyslexia which all caused some learning disabilities for him. He had a large plexiform removed when he was 7 that was rope like and wrapped around his collarbone and shoulder blade and went down into his rib cage. He also had kidney issues. He passed away at age 13 due to brain cancer. Ashton has a large fibroma in his rib cage and sternum area and has a little learning difficulties but for the most part Rachael believes they all have a mild case compared to some, but continues to raise awareness for both NF and childhood cancer because she believes they both deserve a cure.

Case Study # 67 - Stephanie Awaiting the Train

"Stephanie Awaiting the Train" Oil on Canvas. 30" x 24" 2019.

Stephanie Forbes was born and raised in Sacramento California. She grew up the oldest of three kids. Neither school nor home life were easy for her during these years. Doctors diagnosed her around the age of 5 with Neurofibromatosis. Her NF is a case of genetics passed down to her as her mother also has NF. In school, She suffered relentless bullying at the hands of her peers. She suffers from a large plexiform tumor on the side of her face that lowers her ear. Doctors are not able to operate on it at this time. In addition to that, she experiences much pain throughout her body. Stephanie had many operations and procedures growing up, many times having to travel several hundred miles just to get an MRI.

Prep Sketch

Stephanie is now the mother of two and grandmother to one. Michael, her son, was born in 1996. Cecelia, her daughter, was born in 2002. Michael had a daughter named Amaya who was born in 2017. Stephanie met her now husband, also named Michael, on a Facebook page for adults with Neurofibromatosis. They enjoy telling the story of how he was having a bad day so she mailed him 2 dozen snickerdoodle cookies each with a positive affirmation of uplifting notes between them. After several years of writing back and forth and many hours of telephone conversations, Stephanie and Michael met in person for the first time and fell in love ~ quite possibly even before that initial meeting. Stephanie enjoys photographing infants and nature. She also enjoys writing poetry, painting, pottery and many other artistic activities. Michael has a love for trains and on this day they both sat and waited for the trains to come down the track.

One of the best attributes about Stephanie is her kindness and compassion toward others, especially those with disabilities. Her experiences as a child and young adult shaped her to be more empathetic and understanding of others needs, to a fault Stephanie will often put others needs in from of her own. She and her husband are both very involved with NF Midwest helping with their annual walk and fundraiser in Naperville, Illinois every summer.

A Portrait of Progress - Ashok's New Face (#25, #52, #57, #69)

"Ashok Holding up the Bean" 2019. 30" x 24" Oil on Canvas.

September 2019 Update:

Prep Sketch for "Ashok Holding up the Bean"

I am starting the next painting of Ashok post 3rd surgery. This will be the fourth oil painting that charts his progress through the surgeries with the most recent surgery focused on the addition of his prosthetic eye. The eye was an additional $1500 that my drawing friends in Omaha helped fundraise. My friend Regina and I drove out to Chicago to spend Labor Day weekend with Ashok. On the first day he took us to the Hindu Temple of Greater Chicago located in Naperville, Illinois and then later that evening we drove into the city and visited Cloudgate (the Bean) and Millenium Park. Ashok is an avid photographer and took tons of photos, but in a fun turn of events, I was able to capture a whimsical one of him experiencing "the Bean" as most people call that sculpture. The second day was devoted to driving out to Rochelle, Ill and going to a place called the Kitchen Table courtesy of our friends Michael and Stephanie Forbes--a couple who both have NF. The restaurant is a "pay what you can" community style establishment. This was Ashok's first time trying grits. Afterwards, Michael took us to the rail line where the BNSF and the UPRR cross which was a lot of fun to experience. In the afternoon, I spent some time drawing his portrait from life.

December 2018 Update:

Ashok Playing Jenga 30" x 24" oil on canvas. 2019 

I am starting the next painting of Ashok post 2nd surgery. This will be the third oil painting that charts his progress through the surgeries. His second surgery happened in July 2018 and the hospital bill has been paid. We are just trying to get his doctor bill paid off as well as the anesthesiologist's bill. Ashok is doing well and has connected with many friends who also have NF or have family with NF due to his involvement with NF Midwest. On Christmas Day he was invited over by a couple (both of whom have NF). They made cookies, played some games and had a wonderful time. This was Ashok's first time playing Jenga. I thought it made for a fun painting and it reminded me how much fun my family has just playing board games together. We are hoping that once the 2nd surgery is paid off, the 3rd surgery will be scheduled in the beginning part of 2019.

June 2018 Update:
This is the first painting of Ashok post 1st surgery. He dressed up in his national attire while my friend took photos of him for me to use as reference. He has nostrils now and I can tell where his mouth is formed. Drinking with a straw is now something he is able to do post surgery. I could understand him much more clearly on his 2nd visit to Omaha after the surgery. Progress is being made! I promised Ashok that if we could raise money for the last surgery where he would get his prosthetic eye, I would paint a life size portrait of him!

Prep Sketch for "Ashok Playing Jenga" - Post Surgery #2

For those of you new to the journey, I will start at the beginning:

Ashok Shrestha suffers from neurofibromatosis (NF), a genetic condition that results in the development of multiple tumors in the body. In 2016, he began raising funds to travel from Nepal to Presence St. Joseph Hospital in Chicago, IL, USA to have surgery to remove the tumors which have disfigured his face.

Ashok's visa was approved, and he arrived in Chicago in December of 2017.

After several consultations with the medical specialists and many tests, it was determined that Ashok required two surgeries: one for the tumors on his face and cranial reconstruction, and one to place a prosthetic eye. The cranial reconstruction is of course a risky and difficult procedure due to the exposure of the brain during the procedure. Ashok's skull will need to be literally taken apart and completely reconstructed, and the brain will lack support and protection during this most delicate part of the procedure.

"Ashok Visiting Creighton University" 30" x 24" 2018 Oil on Canvas

In addition, the cost of lodging in Chicago has been higher than he anticipated, and he needed someone to help him with meals and other needs after his has been discharged from the hospital, while he is still recovering from the surgery. He has no family and no traveling companion to provide him with day to day assistance and care.

Ashok's arrival in Chicago coincided with my art exhibit in Norfolk, Nebraska to raise NF awareness. It featured paintings of people with NF. This painting of Ashok is among the featured paintings in this exhibit. Ashok made a trip here to Nebraska to participate in the exhibit. My friend Mary and her husband offered him a place in their home while he was here. I was able to schedule several media interviews for him during his visit regarding neurofibromatosis in general and his situation in specific.

Prep Sketch 

Out of these interviews came a request for a US-based GoFundMe page to facilitate the additional fundraising needed to cover Ashok's surgeries, as well as any lodging and meals while he is in Chicago, and any after surgery care he requires during his recovery. My friend Mary stepped in and did all the logistics.

To read the story of Ashok's first visit to Omaha and his interview with the Omaha World Herald, click here:
http://www.omaha.com/livewellnebraska/plus/grace-disfigured-nepali-man-in-u-s-for-surgery-comes/article_89f10aec-d4a8-587a-b820-352dbf683e36.html

To see more of Ashok's story so far, you can read this article:

http://www.omaha.com/sponsored/creighton/art-is-everywhere-nepalese-man-gets-new-lease-on-life/article_e0b56fd5-08d1-5ccc-953d-3e1ce4e6ce9c.html?utm_medium=social&utm_source=facebook&utm_campaign=user-share

Original painting done in 2016
"Ashok Chatting with Friends"

We had many setbacks during this journey including the hospital reviewing his case and more than doubling the expected costs of the surgery. We are blessed that so many people stepped up and donated--including my friends, family and Creighton University along with the NF community and Nepali communities in Chicago and Omaha. In fact, all bills received for Ashok's first surgery have been paid in full! Thank you to each and every one of you who have made this possible!

You can see the difference in Ashok from this before and after picture. Dr. McKinnon was able to remove about 85% of the tumor:


The amounts paid specifically for the 1st surgery and recovery were:
$25,000 to Dr. McKay McKinnon
$26,500 to Presence St. Joseph's Hospital
$3,528 to Midwest Anesthesia Partners

The Chicagoland Nepali Friendship Society raised funds which covered a live-in caregiver for Ashok during the first month of his recovery. Members of the Nepali community in Chicago have also continued to provide Ashok with an apartment as he recovers and waits for his next surgery.

Before and after the first surgery

Thanks also to the family of Sheila Drevyanko, volunteer with the Iowa Chapter of the Children's Tumor Foundation. Her family has provided significant support, including transportation to and from the hospital and most doctor's appointments, furniture for the apartment, help with filling prescriptions and much more. We appreciate their "feet on the ground" support in Chicago.

We have come so far, farther than we would have thought possible! When the hospital nearly tripled their fees, none of us knew how we would ever have the funds necessary, but you all came through.

Please continue to share this campaign and contribute as you are able. We have only weeks before Ashok will be ready for the second surgery. Estimated cost is approximately less than $20,000. It isn't nearly the hurdle of the first one, but still... no small sum. All help is much appreciated!

https://www.gofundme.com/ashok-shresthas-surgeries

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. 

Prep Sketch for painting

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.

Prep Sketch for oil painting

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.

Case Study #64 - Micki Baking Peach Pies

"Micki Baking Peach Pies" Oil in Canvas. 30" x 24" 2019.

Micki Cole always wondered what the “spots” were on her body and why she had so many “birthmarks” on different parts of her body. Despite having gone to many doctors regarding headaches, pain, struggles in school, it would take her 25 years and a chance encounter with a radiologist to lead her to the answers she had longed for all those years and she received her diagnosis when she was 25. Micki struggled in school, mainly difficulties in math and was placed in special education classes. With the assistance from her family, Micki was tested at the Mayfield Clinic in Cincinnati, Ohio and it was found that Micki was gifted and placed back into mainstream classes, but she still struggled. In high school teachers weren’t supportive, and she was often discouraged from exploring things she was interested in, at one point even being told “she wasn’t college material”. Growing up Micki experienced pain in her legs and grew very fast reaching five foot seven by fifth grade, this pain was diagnosed as growing pains and the horrible headaches were said to be attention seeking behavior, something she tried to explain was real but was often ignored. Despite what she was physically going through Micki was extremely active in sports, running track and field and playing softball.

Prep Sketch for oil painting

After high school Micki worked and put herself through college, it was there where her life changed. In high school she was picked on for having skin that looked different and for having “bumps” all over her arms and legs. But in college she met a group of friends who accepted her and helped her come out of her shell, she learned about true friendship and she is still friends with these people twenty-five years later. It was also when she learned about Neurofibromatosis (NF). When she was twenty-five Micki was sick and went to the emergency room with difficulty breathing, upon having an x-ray the doctors discovered a “spot” on her lung and suggested follow up. The radiologist Dr. Roush happened upon Micki as she was getting dressed and noticed the café au lait marks. He said “oh, you have neurofibromatosis”? With a puzzled look Micki asked, “neuro what”? Micki had never heard this despite having gone to several doctors over the years regarding “the spots”. After this interaction and a referral to his friend, a dermatologist, she received confirmation of NF1. Upon the initial diagnosis Micki was terrified from what she found in medical journals and the difficulty she had trying to find a doctor to treat her. But luckily, she found a doctor who knew a doctor that lead her to a wonderful group of doctors at The University of Cincinnati who help her navigate the ups and downs of NF1. Micki has had a hysterectomy in addition to surgeries to remove tumors from her lung, leg, arms, back and eye. After much consideration and research, she made the decision not to have children due to the risk of passing it on. Micki continues to deal with chronic pain and has had to learn to adjust to life with it.

Despite the diagnosis Micki has gone to college and graduate school where she graduated in the top five percent of her class. She has worked with people with disabilities for over twenty years. Micki has hiked a small portion of the Appalachian Trail even making it up to the top of McAfee Knob in Virginia, while her softball days are few and far between, she has found a new passion for baking, gardening, hiking, biking and golf. She has completed 4 half marathons to raise awareness of people with disabilities and has raised money for NF research with these half marathons. You can find her on nice days doing one of these activities or volunteering for a few different causes.

While receiving the diagnosis and living with NF is not easy for the individual or the family, Micki wants to let the world know that people with disabilities hidden or visible are people too. You too can reach your dreams with determination and support from loved ones. On bad days when Micki is struggling with pain from NF or struggling with feeling down and isolated because it hurts for someone to touch and comfort her. She tries to remember, God gives his toughest battles to his strongest warriors. Micki will continue to fight for her fellow NF Brothers and Sisters.

Case Study #63 - Jose Renewing his Vows

"Jose Renewing his Vows" - Oil on Canvas. 30" x 24". 2019

Jose grew up in the Riverdale neighborhood of the North Bronx, in New York City. He lived there with his stay at home mother, his father a US Postal Carrier, and his older brother. At a young age, Jose knew he had several café au lait spots but was always told they were birthmarks. He was born with NF1, passed onto him from his father. It wasn’t until he was a teenager that he knew he also had NF. His doctor never brought it up, and his family had a very little understanding of it. Jose would wear a t-shirt in the pool because other children would ask him about his spots, and that made him very sad. They would taunt him, and say many hurtful things. It wasn’t until his teenage years when he started developing confidence in his appearance.

prep sketch

Years later, life brought him to the beautiful Pacific Northwest, and he resides in a suburb of Portland, Oregon. He has been married to his wife Stephanie since 2008, and they have three girls: Dalia, Shea, and Izabella. Shea and Izabella also have NF1. With a better understanding of NF, the Torres family has worked hard to create more awareness around NF in their community. They worked with a local dance academy to put on a recital/fundraiser that raised thousands of dollars for the Children’s Tumor Foundation. Additionally, they raised money to light up an iconic bridge with Green and Blue on NF awareness days, and they have taken part in multiple NF Walks. Although the tumors have become numerous in Jose’s adult life, NF1 has not stopped Jose from loving life, and he does not allow his NF1, and the bumps (tumors) on his skin define him. Stephanie and Jose are raising their children with that same attitude. When Jose isn’t spending time with his family, he is enjoying his job as the Associate Director of Sales and Training for Oregon Market, a large retail company. 

The painting is of Jose, on one of the best days of his life. He is renewing his vows with his wife of 10 years. She has not only been the best life partner he could have, but she has become a voice, and force creating NF awareness in the community. On September 15th, 2018 Jose and Stephanie were finally able to have the wedding they always wanted. It was just a few days after their 10th wedding anniversary. 10 years ago, Jose’s mother was suffering from a terminal cancer known as Multiple Myeloma, it was very important to both Stephanie and Jose that his mother got to see him get married. They scheduled a date at the court house, and his mother was able to see her youngest get married. Between a move back to Oregon from New York, 3 children, and a full decade the time was finally right. The day was perfect, many family members, and friends spent a beautiful evening together celebrating the love that Jose and Stephanie have for each other. 

Jose encourages everyone with NF to not let NF alone define them, and seek out what makes him or her happy. He fully understands the difficulty that NF can cause in people’s lives, and hopes that one day it is a thing of the past. He encourages all NF fighters to keep fighting, and spread the word. He believes that through awareness, we can find a cure.

Case Study #62 - Lizzy Getting Engaged

"Lizzy Getting Engaged" - Oil on Canvas. 30" x 24" 2019

In July of 1993 Lizzy Hubbard's family and her life changed. What started as an eye doctor appointment for what was thought to be a lazy eye, turned into a more significant appointment with an ENT. He ordered a biopsy that turned into the conversation about her having Neurofibromatosis, that ended in “oh she has tumors, don’t worry about it.” As well as other nonsense like “she's going to be blind and/or deaf, She will have mental delays, she wouldn’t be able to do what ‘normal’ kids do and she won’t live passed age 9” Not too long after that procedure the tumors started to grow.

Lizzy has two prominent ones in her face and neck. They hurt, and they can’t be removed easily.
Soon after that she started school, and with that brought the beginning of the bullying, and later when she realized that she looked different however she didn’t understand why. For years Lizzy couldn’t look in a mirror without sobbing and asking herself "Why do I look this way?"

prep sketch for Lizzy Getting Engaged

When Lizzy was 6 she finally got to meet others who had gone through similar struggles (although with different conditions). She started to become slightly more comfortable with how she looked, but still was getting bullied a lot, with comments ranging from “did she get hit in the mouth with a shovel” to “If I looked the way you do I’d have killed myself years ago.”

It wasn’t until Lizzy was 10 that she met someone else with NF, but she really didn’t stay connected with them. At age 14 she heard about Camp New Friends and started to feel connected to a community that understood what she was dealing with and could give her advice on what to do or just let her vent. Even though she had met many others and started to feel connected to this new community the struggles with how she looked were (and still are) very much in the forefront of her struggles with her identity and confidence. Up until about a year who she would be extremely uncomfortable with wearing her hair up, unless she had to. 

Lizzy is slowly gaining confidence in who she is and learning that NF is part of her identity and accepting that she can’t change her appearance nor can she change how people react to it. Yet she can change how she reacts to how others reactions to her. Lizzy has also thrown herself into fundraisers for NF like the Cupid’s Undie Run.  To quote her, "I have NF but NF doesn’t have me."

Case Study #61 - Ashley Doing CrossFit

Ashley Doing Crossfit - 2019 - 30" x 24" Oil on Canvas.

Ashley was diagnosed with NF Type 1 at the age of two. Her NF was due to a spontaneous gene mutation. Starting at age two, she started undergoing MRIs. School was hard for her because of her learning disability. But she didn’t want NF to define her, so she found out how she needed to learn to understand things better. Ashley graduated high school with a 4.0 GPA. She also attended Valley City State University and graduated with 3.56 GPA. Then she went on to Massage Therapy School and graduated with top honors..

Ashley remembers coming home many days from school crying because she was bullied for the fibromas she had on the outside of her body or because she was going to different classrooms to learn or take tests. Ashley had a hard time trying to fit in because of how people looked at her because of her bumps and she felt like an outsider. Sometimes to this day she still feels like an outsider because of her NF, but does have a couple good friends and some amazing family members who mean a lot to her. They don’t treat or look at her different just because she has NF.

Prep sketch

Some NF side effects Ashley deals with daily include slower hand-eye coordination, balance issues, dizziness, numbness in her right hand and right foot, constant nerve pain throughout the body and headaches. Comprehending some new things are still hard for her, as well as reading and spelling sometimes.

Ashley has multiple MRIs every 6 months to once a year on her brain, whole spine, hips, pelvis, and breasts. She also has PET scans every 4 to 8 months. Ashley travels to the Mayo Clinic in Rochester MN from Fargo ND about every 3 to 6 months for doctoring for her NF due to having no qualified NF specialists in North Dakota. Ashley has to have biopsies now and then when a neurofibroma looks suspicious on the MRI. She has many fibromas inside her body and also on her skin. So far she has only had to have one major surgery to remove a neurofibroma from her left side of her neck that was on the vagus nerve ~ the fibroma was over the size of a lime. She has also had many neurofibromas removed on her skin due to the shooting pain in that area if it was ever touched.

Dealing with the nerve pain Ashley experiences daily, she enjoys attending a CrossFit gym 4 to 5 days a week and runs 2-4 miles a week on her days off from CrossFit. Ashley started CrossFit in March 2017. She shows up consistently and does the work even on her bad days when the nerve pain and numbness is higher than normal. There are some things she needs to modify during the workouts due to her nerve pain throughout her body and the numbness in her hand and foot. In January 2019 Ashley was awarded the Grit award from CrossFit Fargo during the athlete appreciation social.

Ashley is a licensed massage therapist and reflexologist and owns her own Massage Therapy business called Ashley Rae’s Massage which she opened in 2011. She has a steady client base and keeps very busy with that.

In October of 2016, Ashley ran a 10K to raise awareness for NF. She ended up raising $1550. She beat her goal of 1 hour and ran the 10K race in 58:16. She got to wear a Run for NF singlet, during the race. Ashley now goes to Washington DC every year to talk with congress to help raise awareness for NF and asks for NF research funding through the Congressionally Directed Medical Research Program (CDMRP).

Case Study #60 - Jennifer Advocating on the Hill

"Jennifer Advocating on the Hill" Oil on Canvas. 2019. 30" x 24"

Jennifer Berube started puberty early at age ten and had many dermal tumors. Her number of tumors increased significantly during her teen years. At age 25, her family physician referred her to a pediatric specialist for diagnosis. That pediatrician diagnosed neurofibromatosis (NF) by physical examination, because of all the tumors. Genetic testing showed her NF to be due to a spontaneous mutation. Jennifer also started menopause early: at age 38. 

Between puberty and menopause, the number of tumors increased significantly. Over the years, she had many surgeries to remove individual tumors that became painful. In 2012, she had an electrodessication procedure (ED) to removed over 500 tumors at one time on her back.

Growing up with NF, Jennifer had a lot of issues, but is not sure if they were all NF related. As an infant, baby and child, she dealt with many health issues. By age two, she had endured eight eye surgeries to correct a wandering eye. Because of so many surgeries so close together, when she was two, her lungs collapsed and she had an emergency tracheotomy.

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Jennifer struggled in school both academically and socially. She endured years of bullying from not only peers, but also some teachers. One teacher in particular, who thought she was not trying hard enough, told her parents that she was a waste of educational money and teacher’s time and was not going to amount to anything. Her mother told her this when she became an adult, but she also endured this type of treatment while in school. However, the more she was looked down upon, the more determined she became to graduate and be successful in her adult life.

Ten years after graduating high school, Jennifer went back to college and had an awesome teacher who realized that she had learning disabilities. No one had ever mentioned learning disabilities to Jennifer before. This teacher helped her to succeed in her class and beyond. Jennifer went on to graduate and get her AA degree in Early Childhood Education. She was working close to full time while attending college and due to her teacher’s help and support, was able to maintain a 3.6 GPA while taking a full load of credits. She even made the Dean’s list one quarter.

It was not easy, but once Jennifer understood her learning disability, she figured out what worked for her and went for it. Jennifer worked her whole adult life until 2017, when at the age of 54, she became seriously ill and her Dr. said that she could not work any more. After 25 years working for the State of Washington, she had to leave friends and coworkers and move on to a new life of retirement. Retirement has allowed her to get even more involved with NF groups. She has gotten really involved with both CTF (Children’s Tumor Foundation) and other organizations involving NF research. Now, she tries to be an advocate for others that have NF. Over many years, she has raised money for NF research with local NF walks. Since retiring, she has attended several NF conventions. She really values the online support of NF friends met through facebook and hopes that she can help them and be a friend.

Case Study #59 - Kay Preparing her Vlog

"Kay Perparing her Vlog" 30" x 24" Oil on Canvas. 2019.

Kay Cadiz was diagnosed with NF1 at a young age. Kay did not know that her NF would result in a difficulty learning math. Nor did she anticipate the extent and amount of tumors which would eventually start growing throughout her body. Growing up Kay did not have noticeable tumors or nodules. She did however have cafe au lait spots. She had surgeries to remove tumors on her face and hands. Kay fortunately did not get bullied too much albeit but by one person. Thankfully, she grew up with a friend who also had a different medical condition and to this day Kay and her friend have been friends for over thirty years now.

Kay’s first round of surgeries was when she was about 8/9 years old. She had a tumor on her left chest ribs area. She also had tumors on the corner of her eyes. Later, she went on to have surgeries on her left leg and hands when she was around 13/14 years of age. At age 20 she had to have a tumor removed on her right cheek which made it hurt to smile due to the mass.

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Kay was diagnosed with a Malignant Peripheral Nerve Sheath Tumor (MPNST) November 2017. Radiation therapy soon started. She later had surgery March 2018. The gap was due, in part, to having her recover from radiation first. Because of the location of the tumor, the sciatic nerve was damaged. Today Kay walks with a leg brace for support.

Living in Honolulu, Kay creates her content on YouTube around cooking and eating. She films Mukbangs which is an eating show. Sometimes, she still finds it hard to vlog out in public because of the stares, yet she finds it liberating to just be herself! She also incorporates these vlogs into her channel.

You can find Kay on her YouTube Channel at: Www.Youtube.com/Ruanneats

Case Study #58 - Matt Fly Fishing in Yosemite

Matt Fly Fishing in Yosemite -  Oil on Canvas. 30" x 24". 2019

Matt Hay is a married father of three who works in media sales and marketing. He was diagnosed with NF2 during his sophomore year at Indiana University. As a result, over the last 15 years, Matt has dealt with deafness, facial paralysis, vision problems, and balance issues, as well as long recoveries from a spinal surgery, 2 brain surgeries, and 9 eye surgeries. Matt deals with NF2 by focusing on what he can do rather than what he cannot. In addition to being an avid fisherman, he spends his time raising funds for neurofibromatosis research through NF Walks and NF Endurance events like marathons and, most recently, an IRONMAN distance triathlon. He also earned his MBA degree from the Indiana University School of Business in 2010. These accomplishments were things he once thought impossible due to the physical challenges caused by NF2.

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Matt is grateful for CTF’s NF awareness and fundraising work. His involvement with NF Forums and the physicians he has met at those events led him to learning about the auditory brainstem implant (ABI) that allows him to understand speech with the aid of lipreading. 

By staying involved with the NF community and taking part in fundraising walks, runs, and other events, Matt is able to maintain certain aspects of his health that are within his control. He also appreciates the “upward spiral” that he experiences both mentally and physically from interacting with such a supportive community of caring people.