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."

Case Study #17 - Hayley Shooting Photos

Hayley Shooting Photos. Oil on Canvas. 30" x 24"

Hayley Marrs lives in Brisbane, Australia and was born with NF1.

In Hayley's words: "I did not let NF take over and win, I will not let it stop me from achieving my goals. I have had many challenges in my education life, public life and just health life. To sometimes face the public is difficult and this won’t ever change. I just learn to get through it and move on; it’s a really hard thing to do. Yet, I go through those times when it’s hard to handle, the struggle is hard, and only another person with NF would understand. People continue to stare and sometimes ask questions and I answer them to the best of my ability, but it’s a very shy and personal matter. The truth is many people only see the outside but if they should take the time to find the key and unlock my world there’s always something amazing to learn about me. It takes only a short time to peel back my layers and reveal “me”: creative, funny, great with children, sweet, kind and quiet and a limited edition. Photography is my way to express how I see the world. An item that is perceived as something plain and boring can become an amazing artwork, a way to show others that there is more than just the outside, a portal to show them the beautiful way I see a different world through my eyes to lens."


Prep Sketch for the oil painting

"I graduated in December 2014 from the certificate 3 of photo imagery and am heading my way toward the diploma. This has been a huge achievement for me as my education wasn’t always an easy avenue to navigate through as I had to attend education support classes to learn what I needed to know just to get through some of the courses. Photography has taught me more than just "click”. Each day I try to push that creative drive a little bit further as I will continue to cultivate my creative abilities. And I will make great things happen.