Case Study #25 - Ashok Chatting with Friends

"Ashok Chatting with Friends" 30" x 24" Oil on Canvas

Ashok Shrestha, who is currently 54, lives in Kathmandu, Nepal and suffers from NF. In particular he has a an extremely rare facial tumor that can become a life threatening condition if not treated. When he was born, he did not have this tumor in the capacity as it appears today. It first appeared as a very small and negligible lesion, similar to a mole or skin tag at the corner side of his right eye. Later when he was one year old, his late father took him to have surgery at the Shanta Bhawan Mission Hospital in Nepal under the supervision of a visiting doctor from the UK. The second major surgery was undertaken at the Bir Hospital in Nepal when he was 12 years old. After that, he has undergone two more major surgeries in Patna, India.

Ashok has completed his Master in Commerce in Accountancy and has been working in the computer industry for many years. The tumor, however, has been increasing in size an

Prep sketch for the oil painting
(photo reference courtesy of Kristina Allen)

d turned into a huge problem which has landed him in this present situation. Ashok has no work or job anymore because of his face and has been harassed by people. After his father died, the whole responsibility of taking care of his mother is upon him. His mother was suffering from paralysis caused by a brain hemmorhage. His parents’ small property (house) has gone toward the expenses of his mother’s treatment and daily expenses for routine life to survive. Now, Ashok has the enormous problem of being totally bankrupt.

Since then he has been faced with physical problem of his facial tumor as well which has made eating and conversation problematic along with his economic condition Therefore Ashok has made a video on youtube to request to the public for raising funds so he can have a normal life in the future. Because it is so difficult to receive adequate care in Nepal, it is Ashok's goal to raise the funds necessary to permanently relocate to the United States, become a US citizen, and seek the surgical expertise of the highly skilled Dr. McKay McKinnon at St. Joseph's Hospital in Chicago, IL. Ashok has so far found good response and help from many people of entire world which as given him hope. He still needs a large amount for his treatment. He will need four major surgery and it has been estimated for $35,000 for first surgery and now he has collected around $15,000 so he is making good progress! Ashok is requesting for all people to help him by donating for his surgery.

Please watch the youtube video here: https://www.youtube.com/watch?v=TlvHFszYUQU

Viewers can donate to help Ashok by donating here: https://www.gofundme.com/together4ashok

Or you may contact Ashok directly to see how to help:
Name: Ashok Shrestha
Address: Dhobighat, Lalitpur
Country: Nepal
Mobile /Viber: 9841 530 741
Skype: ashokshresha
Email: ashokshresha@gmail.com

Case Study #24 - Loni Directing Cupids

"Lonit Directing Cupids" 30" x 24" Oil on Canvas

Prep Sketch for 30" x 24" oil painting.

Diagnosed with NF1 at the age of 6 months, Loni has undergone over 13 surgeries to correct the pseudoarthrosis in her tibia and to have tumors removed. It wasn't until 2013 that Loni discovered there were people in the world advocating to find a cure for NF. When she and her husband were starting to plan a family, they learned about the Cupid's Undie Run and their determination to End NF through raising money for the Children's Tumor Foundation. She immediately wanted to jump on the train and became the Race Director for Mason City, Iowa. Since Mason City's inaugural year in 2014, North Iowa has raised almost $190.000 ear marked for research to END NF.

Case Study #22 - Woan-Harn Running a Race

"Woan-Harn Running a Race" 30" x 24" Oil on Canvas

Woan Harn lives in New Taipei City, Taiwan, which is a beautiful and humane country, welcoming to friends to come to Taiwan to vacation. She recalls a time when in her youth, she found herself with the realization that she appeared different (café au lait spots). At the age of 22 and after some searching and medical examinations, she learned that she had neurofibromatosis. She had a very large tumor on her neck. The doctors said at the time: there is no medicine to control and no treatment. They were not going to operate on it as it was too risky--the tumor was intertwined with nerves in her neck.This left her feeling quite depressed, almost every night wanting to tear her face, feeling so miserable.

Prep Sketch for Woan-Harn Running a Race (我的生命歷程與自我價值)

Woan-Harn was lucky because as well as close friends came the support and encouragement from the Sunlight Foundation and Accton Public Museum assistance, so that was like having another NF friend. These organizations provide the opportunity for fellowship together and share feelings with each other. The Sunlight Foundation and the National Taiwan University, Chang Gung Memorial Hospital also holds occasional free clinic and medical lectures, through talks and clinic activities, so the NF community can better understand ourselves.

Because of this, Woan-Harn thought she wanted to help more people, and therefore decided to engage in Social welfare work. She joined the Spiritual Child Development Center, which gave her insight into different life experiences, and her colleagues also gave her a lot of encouragement and positive support, and empowered her to believe that feel that she can do the things she want to do, and have the ability to help other NF friends!

Woan-Harn feels very fortunate in assisting the Sunlight Foundation, Accton Public Museum, by recruiting several NF friends, asking professional social workers, psychologists, and even a theater teacher, to help the foundation focus on activities around:leadership, empathy and care, etc. In the process of these meetings, everyone grew lot, and after nearly three months of intensive training and meetings, finally gave birth to a new NF centered charity: "Peas Dragon Association" (Sunshine nerve fibroma patients Association). In Woan-Harn's words, "I hope to be able to scale new heights, more patients understand the operation and service groups, want to work more with their own specialty, so then to school in professional courses, in addition to their own work of in progress, the practice of social work courses, let me on the operation of non-profit organizations and patients will be more understanding, hopes one day was officially established as a corporation aggregate organization."

Sunshine neurofibroma patients Association, after nearly four years after the operation has really helped, because Li Ming Ren a physician at National Taiwan University Hospital, (which is a deep sleep fraternity organization) has been unable to meet many NF family. This association has helped and still wants to upgrade to better and more comprehensive services, and Fellowship members also throughout the province, want to build our strengths, to form associations, the Association through organizational strength, help more Taiwanese NF patients to see their hope for the future.

Under the assistance of the Sunlight Foundation, Accton Public Museum, National Taiwan University, Chang Gung Memorial Hospital, was officially established in 2010 the Corp. Taiwan neurofibromatosis association ( http://www.nf.org.tw/).  This nonprofit's aim for NF is to care and encourage patients to support each other, in medical research on the breakthrough, and play the role of the advocate in health education in the community, so that the public, government agencies will experience more empathy, acceptance of NF, and help those with NF to make friends regardless of in life or work, social in, can enjoy equal treatment.

In Woan-Harn's words:

Let yourself grow a lot, no longer suffering from illness, more courageous in the face of their future life! To pursue the life you want!

In order to make myself more healthy and more dynamic, I began to participate in road race events, from three kilometers, five kilometers, seven kilometers, ten kilometers, under the cumulative twelve kilometers completed (First half horse) my life in 2014 twenty-one kilometers. In order to prepare 21 km road race, I attended the training group, as well as its own practice and adjustment. I think if you believe, you can achieve the purpose. In the running process, I am aware of  my breathing, I pay attention to the pace and watch my mind, but also to enjoy the wonderful scenery on the way of each race.

Persistence in the end, let me have the courage to not give up a successful road race of my dreams, I think, a miracle of life, is to rely on myself and create success, people have unlimited possibilities.

Let more people know NF, with our stories, hope for the future in Taiwan, to encourage more people, thank you for Rachel.

<藝起來串臉> https://www.facebook.com/NF0517family/

＜社團法人台灣神經纖維瘤協會＞

 http://www.nf.org.tw/

I think if we really want, we can be able to succeed! My future is the most beautiful!

Know they are not alone, because I want to share the joy, to my friends!

Case Study #21 - Katie Remembering Nan

Katie Remembering Nan - 30" x 24" Oil on Canvas.

Katie Newell lives in Braintree, United Kingdom. In Katie's words: "I do not let NF bring me down, but nevertheless its made a huge impact on my life, and I've not been given a break. Being poked and proded at the age of seven wasn't fun! All I ever wanted to do is just do the stuff everyone else could do. I wouldn't say growing up wasn't enjoyable, but it was tiring, but worth it to be alive. I ended up with at least a few years break after life saving surgery in America where I went to Boston's Children's Hospital to have a rod inserted into my spine to help with the scoliosis, for both straightening and because of the tumors that had grown throughout my spine.

As Katie grew into a lady the growing of fibromas and plexiforms started all over again. She recalls being devastated. In her words, "You can only imagine what my stubborn-fifteen year old 'I'm-so-mature-now-I-know-what-life-is about' attitude saw upon everything. It was demoralizing that I couldn't tip-toe anymore and do ballet like I had previously enjoyed. I only had 30% lung function in one lung due to a tumor that compressed the other completely. I seriously felt like every road I took had a bump in it. Everything I enjoyed, just taken from me". 

Prep Sketch

But of course over time, Katie found new interests and new things she could experience. She can honestly say now that, yes NF is an challenge to live with, but it's a challenge she gracefully accepts. Sounds unbelievable, but compared to things like depression that she has dealt with in life it's honestly a breeze in her opinion. "You wouldn't believe what silly things actually upset me!! (looking in the bicsit tin to find its empty! That's upsetting!! aha)"

Each year, Katie and her mother pay tribute to Katie's nan by doing a balloon release. There is no cemetery to go to, so they also plant flowers in their garden as a yearly memorial. Katie's mother, Vanessa, talked not only about the strength of the grandma, but also of Katie's strength and remarkable gifts and talents. Her mother also has NF, but says it is very mild. She feels like her child has endured so much with the card she was dealt.

But like everyone in the world, Katie has good and bad days. She feels that she is no stronger, nor different than any other individual in the world, with the exception that she seriously wants a pet alpaca. Currently, she enjoys drawing "Anime" (Japanese cartoons), animating, and creative writing. She's looking toward a future of going into creative writing classes as she's always wanted to write a fantasy novel. Katie does miss ballet sometimes, but tends to not look at the stuff she can't do, but at the stuff she can do. After all, in Katie's words, "Life isn't about finding yourself, life is about creating yourself!"

Case Study #20 - Marcus Branding a Keychain

"Marcus Branding a Keychain" 30" x 24" Oil on Canvas

Marcus was diagnosed with Neurofibromatosis at the age of one. There were multiple neurofribromas on his body and freckling under his arm. At a young age Marcus battled with a speech problem, social isolation, horrific headaches, chronic pain, and minor learning problems. Never revealing these issues he faced, Marcus persevered through school with determination, family support, involvement in the community, a speech therapist and his faith in God. During middle school a neurofibromas appeared on the right side of his chin, this caused him to become insecure. 

After completing his undergraduate degree at The University of North Carolina at Greensboro, he moved to Washington DC, where he was introduced to Barbra Levin from NF Mid Atlantic in Baltimore Maryland (nonprofit organization providing information and support to people with neurofibromatosis (NF), their families and anyone interested in the disorder). Barbra introduced Marcus to many others with NF in the Baltimore/Washington DC area. After meeting others with NF for the first time he started to learn more about the effects of the disorder. He realized that the many issues he had in life and thoughts of something being wrong with him had an answer now. In 2009 his father, mother and sister joined Marcus to participate in a fundraiser event with the NF Mid Atlantic’s Survive the Harbor, in Baltimore Maryland. The event was amazing and provided Marcus's family an opportunity to be apart of his journey and the cause to bring awareness to end NF.
In 2010, Marcus started having weakness and numbness in his right leg, right arm, and loss of urine control (trouble/loss with bladder control) After having Xrays, MRIs and other test, it was found that problems could be relate to a Chiari Malformation, tumors on his spin or plexiform neurofibromas in his pelvis. From that moment to 2014 life became slightly more difficult. Marcus dealt with new issues of having trouble walking which led him to believe he would never run again. He also became less social, not attending public events for fear of being question if he was intoxicated, and anxiety when driving; he dealt with the hurt and pain in silence.

In the midst of this Marcus found his strength in God and seeing many others stand strong who have NF and other ailments but did not give up. Not being able to run, he began spin/cycle classes, lifting light weights, swimming, stretching and working on his balance in order to build up his strength. Breaking the shell of isolation and fear he started opening up about NF and the pain and struggles he went through and still encounter from time to time. Now the disorder that once kept him in hiding has become a great passion to share and inspire others. His life story speaks for itself; patience, perseverance, faith and determination.

For the first time in 4 years, Marcus was able to run. He entered the 2015 Cupid's Undie Run in Washington DC, wanting to once again bring awareness to NF. He’s now meeting many other NF friends through social media websites and attended his second NF forum in Arizona in 2015. After attending the forum Marcus plans on getting involved in the NF Endurance, local NF WALKS, the local Children Tumor Foundation, NF Mid Atlantic events and any way to spread the word on NF. He now plans to study nutrition and natural health to help find ways to help ease his pain from NF. Marcus says “Everyday I wake up, and decide to push through the pain knowing that things will become better. I believe in practicing mindfulness and gratitude to enjoy the moment, and take my mind off of issues I am facing. We all must work together as a family to bring awareness and an end to NF.” Marcus enjoys cooking has mastered a variety of dishes, swimming, volunteering at organization that are focus on helping others heal and grow, and learning more about nutrition and fitness. He also enjoys learning about cognitive behavioral therapy and soul care. Marcus believes that God is not finished with him, he has taken what was seen as negative and turned into positive and is expecting greater things ahead.

Case Study #19 - Lenamarie Playing the Drums

"Lenamarie Playing the Drums" - 2015, 30" x 24" Oil on canvas.

Lenamarie M. Mendoza, a 31 year-old girl from San Pascual Batangas, Philippines, was diagnosed with Neurofibromatosis type 2 (nf2) in August 2002. NF2 is a rare genetic disease that causes tumor to grow mostly on 8th cranial nerve or the vestibulocochlear nerve and tumors on other parts of the brain and spinal cord and sometimes on different parts of the body. The vestibulocochlear nerve (auditory vestibular nerve) transmits sound and equilibrium (balance) information from the inner ear to the brain.

Lenamarie had minor surgeries of tumors on her body when she was a child but the findings only revealed a minor cyst. During her elementary days, she enjoyed drawing and music. She used to be a part of mini-band in her school playing lyre and also enjoyed playing “sikyo” (running game) with her friends. She lived as a normal individual.

When she was in high school she lived life as a normal teenager who seeks adventure. She was then a drummer of an all-girl band in her school. Music then was her passion, she noticed that there was a decreased level of hearing in her right ear, but she considered that normal cause due to the loud environment by playing the drums.

Sketch for Lena Playing the Drums.

When she enrolled in college she needed to stop for a year cause of surgery that removed her tumor at the back. Most of the time while in college, she would have headaches coupled with episodes of vomiting. She later found that she had NF2 which was revealed on the biopsy after the operation of her back tumor. She continued her college education even though she knew that eventually NF would take over and leave her deaf. She noticed, over time, that her hearing had become worse especially on the right. Lenamarie perservered and graduated with a degree of Bachelor of Science in Electrical Engineering on April 2006. She became a Registered Electrical Engineer at the same time a Registered Master Electrician on September 2006 and member of Institute of Integrated Electrical Engineers of the Philippines.

She worked on a construction company for a year and a college instructor for five years. Although her hearing was continually deteriorating, she lived her life with purpose and continues to live for the moment. After leaving her job, her MRI in 2013 revealed tumors on the left end just right of cranial nerves which deteriorated even more her hearing in both ears and also has made her lose her ability to walk normally due to tumors in her spine.

Right now, she is totally deaf in both ears and has a foot drop on the left which causes her difficulty in walking and in balance. She is slowly losing all her abilities and talents and can no longer draw because her locomotion is affected. She is realizing that she cannot play drums and do music with a band as much anymore for she cannot hear it, but she still loves to drum as it is her passion.

She watches tv with her eyes and hears nothing and knows that the radio is on when the LED light is turned on. She is losing it all, but she will not lose her spirit and faith. NF is a continuing life battle. In her words, "You’ll never know when the tumor strikes again, and every treatment is of without risks. You’ll never know when you will be deaf, blind or paralyzed. It is not considered cancer and people rarely notice, but it can be worse than that. It is draining to body and spirit but I need to fight and continue my life because there is a miracle, and miracle will always starts with you!"

Case Study #18 - Cassey Rescuing Cats

"Cassey Rescuing Cats" 30" x 24" Oil on Canvas

Prep Sketch for oil painting

Cassey was born in the Philippines and was the first in her family who was diagnosed with NF. "Being in such a small country I thought that I was completely alone until I found the local NF chapter which helped me connect with others with the same condition"

She had quite a troubled childhood because her mother abandoned her at a very young age. She also struggled immensely in school because she had Dyslexia and was teased greatly due to her inability to do simple mathematic problems. "Even today I avoid math any chance I get because I can still hear the sounds of laugher against me."

During her High School years once the NF began to manifest itself she grew a grape sized tumor in the middle of her forehead and was called "cyclops" or "rhino". Through all that however she was able to graduate High School and participate in the International Baccalaureate program and is currently enrolled at Southern New Hampshire University Online pursuing an undergraduate degree in Creative Writing.

In her free time she found a love for animals. In her own words "rescuing, feeding or just being with animals just brings me such joy. I don't feel judged when I help them. All I feel is pure love and affection." Cassey volunteers for an animal organization called Compassion and Responsibility for Animals (CARA) where she helps find and rescue animals as well as helping to organize graphic designers for adoption or fund raising events.

She currently has two rescue cats that stays in her home along with 10 other cats she feeds in her area. "Sometimes the pain of NF can get so bad and be such a downer but what gets me out of bed is knowing that there are loving furry faces waiting for me to help them."