Case Study # 67 - Stephanie Awaiting the Train

Prep Sketch

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.

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, #68)

Prep Sketch for "Ashok Holding up the Bean"

September 2019 Update:
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

Prep Sketch for painting

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. 

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

Prep Sketch for oil painting

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.

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."