Case Study #72 - Barbara Snorkeling at the Lake

Prep Sketch

Born in February 1985, a healthy rambunctious and overall normal child, Barbara was born with no outward signs of NF symptoms. Most of her childhood was spent playing in the dirt, joining in softball games, and riding bikes. Other than being clumsy, she was just a typical child. Barbara retained semi good grades all throughout school. She was well known for her ability to draw. After being accepted to a few colleges, she decided that she would actually take a year off in between and travel. Barbara's travels found her living in The United States Virgin Islands working as a bar back and waitress. She was having the time of her life! Then one day in 2011 she woke up and realized she couldn’t walk. She crawled around and when she finally could walk; her foot on the right side would constantly drag. Barbara was immediately flown to her home state of Maine where her life changed. 

Barbara was diagnosed with NF1. She had thousands of internal tumors, two in particular were in her cervical spine and had caused almost a full spinal cord impingement. Since that day, Barbara has had seven surgeries. NF has left her weak on her right side and she can no longer hold a pencil to draw and hasn’t been able to in many years. NF has made life a struggle. but she really doesn’t mind, she would love for a cure to NF. Her motto is "Life is beautiful even when it’s not." Barbara lives in a small town where not many people have ever heard of NF. Every year she contacts different advocates and hospitals and NF clinics including the one that she receives care at, Mass General in Boston. She gathers reading material and flyers and passes them out to all of the physician's offices in her area. Barbara even carries personal business cards that have her picture and a brief description of NF. The business card also includes links to NF Northeast and the Children’s Tumor Foundation for further research and donation options.

Case Study #71 - 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.

NF: Nebraska - David Ware, Lincoln

Prep Sketch for either large scale charcoal drawing or an oil painting

I drove down to Lincoln, Nebraska as finals were wrapping up for Fall semester: December 17, 2019. It was a beautiful day, sunny and temperatures in the 40s, no winter weather which is a blessing this time of year. When I got to David's apartment, he was waiting for me and had a Coke ready!

I spent about 2.5 hours at his place drawing him and chatting. Growing up in Texas, David is the youngest of three sons and the only one in his family with NF. When he would ask his dad at what age he was diagnosed with NF his dad would just cryptically quip "You were born with it!" That seemed to be the extent that his father wanted to talk about his diagnosis. His brothers are in town, but they don't get together too often, mostly just at holidays.

David talked about how he got bullied as a youngster for his NF as not too much was known about it while he was growing up. He graduated from high school in 1973 and went on to get a business degree. After working for many years, he finally went on disability due to his NF. He currently has two inoperable brain tumors, depression, ADD and is on several medications due to his NF. He feels lucky to have a van in town that picks him up to take him to his local doctor appointments. He used to be able to drive, but he can no longer do that. He doesn't really miss driving that much, but he does miss the freedom that comes from being able to drive.

Drawing done from life while sitting at David's apartment

Because of his NF, he lost his eye and was recently outfitted with a glass eye. I, personally, think his glass eye looks amazing and it fits really well into the socket. He had been wanting one since he was a teenager, but no doctor wanted to take on the challenge of removing any good eye tissue. He finally met a doctor that would do it and he is so happy with the results.

As I was drawing his portrait, David told me that he had been married for awhile to a woman in Utah who also had NF as did her son. Unfortunately, the marriage did not last and David returned to Nebraska. They had met in a Facebook chatroom, but he has not gone back to the chatroom since.

David spends his time now enjoying his aquarium filled with colorful fish. He cares for his succulent plants and uses his window sill to line them up making a rainbow of color from the plant holders. He is currently looking for opportunities to showcase his photography skills as his apartment is adorned with all of his plant and fish photos. He is a big Husker football fan and loves Nebraska. When I drew his portrait from life, I told him he could sit in the chair I was sitting in if that was more comfortable than sitting on the couch. His couch is so comfortable that he told me he will often fall asleep right there instead of getting up and going to bed.

David allowed me to take several photos of him feeding the fish and just lounging on the couch. I typically paint 30" x 24" oil paintings of people with NF just doing what they enjoy so I may still do that painting, but there was something about the comfort of him laying so casually the entire time on the couch that got me thinking differently. Typically, when someone has never been drawn before from life, they ask me over and over again if they are sitting okay or if they should sit a different way. Not David. I told him to be comfortable and he did just that! It was a treat to draw him and I am thinking this sketch might either become an oil painting or large charcoal drawing.

Case Study #7 & #70 - Henry Checking the Weather

Prep Sketch for 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 #69 - 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.