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.

Case Study #16 - David Preparing BBQ Beef Brisket

David Preparing BBQ Beef Brisket. 30" x 24" Oil on Canvas.

Chef David Gladyness has NF but it certainly doesn't slow him down.

David inherited his NF from his mother's side of the family: his grandmother, his mother, and four of his mother's siblings, four of his cousins,  one of his brothers, one of his brother's children and both of her children all have NF. In David's words, "I decided not to have children, I knew I had NF at the age of 5, but was not officially diagnosed until I was 18, I had a tumor removed of of my left hip and it grew back but it doesn't bother me as it had in the past. Two years ago I had major surgery and spent 15 days in the hospital and was diagnosed with Neuroendricine cancer. I had a Whipple surgery, They removed my gall bladder, the head of my pancreas, 17 inches of my small intestine and 20% of my stomach. Growing up my major issues was a speech impediment."



Prep Sketch for oil painting

David is a culinary trained chef. He got his love of cooking from his father who was born and raised in Louisiana. As a child, he watched his father prepare family meals which including the cooking of wild game and domestic animals. It is not surprising that David's favorite cuisine to prepare is Cajun or Creole. His love of cooking had him return to school, as an adult, to link his passion for food preparation with his natural creative spirit. Prior to culinary school, he had always enjoyed cooking and would attend food fairs and how-to seminars. At some point, his wife finally encouraged him to attend. While there, he had the opportunity to travel to France to cook for the stars in the American Pavilion at the Cannes International Film Festival. It proved to be an amazing time. People always ask David what he likes to cook. His reply is simply, "I enjoy the Savory more than the Sweet."

Besides going to Washington, D.C. to lobby for fund for NF research, David is also very instrumental in running and organizing several different NF camps for kids, one in Michigan and one in West Virginia.

Case Study #14 - Juan Practicing Taekwondo

Juan Practicing Taekwondo - 30" x 24" oil on canvas

Juan Rodriguez was born in Massachusetts and at birth he was diagnosed with Neurofibromatosis, due to many café-au-spots. Problematic and heartwrenching for his mother was the fact that Juan's right leg snapped in two due to a tumor that had grown inside of his bone. After his leg broke, he had to have a double operation which involved removing two ribs to try and replace his right tibia. The procedures were done at two months and again at six months old.

As a child growing up Juan was not allowed to play due to the cast that was on his leg that reached up to his hip. The doctors explained to his mother that the operation they had preformed, might not last long and amputation might be an option.

In his later teenager years Juan had many troubles. Teenagers made fun of his leg and underestimated him; believing he was weak. These same teenagers also made fun of the bumps (tumors) that he had growing all over his stomach. While Juan heard all sort of jokes about his tumors, such as "connect the dots", "looks like mountains", and other cruel jokes, Juan decided to do his best to excel in sports, and in this way he could hide his tumors with his clothes.

Prep Sketch - 30" x 24" Oil on Canvas

In September 2013, while in his mid thirties, Juan joined Taekwondo, mostly for joint relief, as he had had problems with mobility, stiffness and pain. Juan hopes to someday achieve his black belt in Taekwondo.

Juan in the past has help spread awareness of NF awareness through the Childrens Tumor Foundation (CTF) in New York City by participating in two of the Cupid Undies Run Fundraiser runs, and casino night. He looks forward to doing more work with the CTF. Recently, Juan spoke about NF at his alma mater, Essex County College, in Newark, NJ helping to educate a class learn about the disorder; a disorder that affects so many people worldwide.

Case Study #15 - Krissy Painting at Night

"Krissy Painting at Night" 30" x 24" Oil on Canvas.

Krissy Diaz was diagnosed with NF2 (the first case in her family’s history) at age 8. The early symptoms of NF2 are symptoms of dysfunction of the acoustic (hearing) nerve, which carries information about sound to the brain, and the vestibular nerve, which carries balance information to the brain. Consequently, hearing loss, ringing in the ears (called tinnitus) and problems with balance, beginning in the teens or early twenties, are generally the first symptoms of NF2.

Although tumors on the eighth cranial nerve are most common, persons with NF2 can develop tumors on other nerves as well. Other symptoms of NF2 may include facial weakness, headache, change in vision, and a lump or swelling under the skin caused by the development of a neurofibroma. In a family member at risk for NF2, a positive diagnosis is suspect if mild signs of NF are found elsewhere, such as one or two café-au-lait spots or a small lump under the scalp or skin.

Prep Sketch for 30" x 24" oil on canvas

Krissy has kept her love for art and earned her Master of Arts in Creative Arts Therapy as a means to give back and help others. She has developed and implemented Art Therapy programs at the Queens Museum Art Access program for deaf school-aged children in her graduate research study. She continues to provide art therapy with both hearing and deaf communities with mental illness and developmental delays. Kristina has also been proactive in the NF community by fundraising while running in many endurance events (Half Marathons, 10ks, 5ks) and connecting with the NF community by forming friendships and support. She is an advocate for similar causes such as St Jude Children’s Research Hospital and the American Cancer Society because she understands on both physical and emotional levels what it means to struggle with chronic illness from a young age and maintaining quality of life.

Case Study #13 - Honor Dipping Guacamole

"Honor Dipping Guacamole" 30" x 24" oil on canvas

I met Honor a few months after the Cupid Undie's Run in Omaha. She lives in Council Bluffs and has NF. She participated in the race with her niece and together the two of them raised over $1500 for the Children's Tumor Foundation. It wasn't until she saw the Omaha World Herald article that Casey Logan wrote about my painting project that she connected with me through Facebook. We met for dinner at La Mesa's, a Mexican restaurant near my house and enjoyed enchiladas and margaritas. It was nice to meet someone who understood and who has lived with NF. Someone you can swap local neurologist and neurosurgeon stories with.

About a month later, she dropped me a line and we met for dinner at Chili's. I cajoled her into the idea that I should paint her portrait in oil. Although, I didn't realize when I proposed the idea just how much she enjoyed fresh guacamole dip. I had originally planned on painting her doing something else like reading a Stephen King book or something. She then mentioned that the guac dip was the real reason for meeting at Chili's (my company was most likely second to the fresh guac dip! haha). I told her to eat naturally as I started clicking pictures of her dipping tortilla chips into the bowl. The people around us started murmuring wondering what I was doing and what was going on with all the photos. I had to get out of our booth and walk around getting all sorts of different angles of her dipping the chips. Our waiter seemed to think I should want to paint his portrait as well or maybe that is just the way waiters try to get better tips. I just smiled and joked "Maybe some other time, for now, I'm interested in Honor and that dip."

Here is the main reference photo I will use,
although I'm going to turn her head and have a more 3/4ths view.
Please note the margarita--I think I will omit that in the painting...haha.

We both talked a long time and enjoyed our dinner. Additionally, Honor is planning on joining my Many Faces of NF 2015 team next February and already has ideas about what our costumes should be. I'm going to let her coordinate that...and I'll just keep painting and just wonder what in the world I shall embarrass myself in next winter!

About NF in Honor's words:

I was diagnosed with NF when I was six years old.  I didn't really start having any problems with it until I was in my 20's, that's when the tumors started showing up. When I was in my 30's I had to have a surgery on my neck to remove one particularly large tumor that was growing into my spinal cord. What started out as a 6 hour surgery turned into a 10 hour surgery as the tumor was much more involved than they originally thought. But they got it all and I haven't had problems with my neck since then. In the last year I have had 5 surgeries to another large tumor that was growing on the outside of my shoulder and several small tumors from my hands, arms and the bottom of my foot.

I'm lucky enough to have an amazing group of family and friends who have been very supportive through all the surgeries, MRI's and many doctor appointments.

Even with all that, I've still had lots of fun, like running in the Cupids Undie Run which raises money and awareness for NF. Together my niece and I raised $1,500.00 which I was really proud of. Plus the added benefit of making new friends. I can't wait until next year, I'm already planning my crazy undie outfit.

I also love to travel. I've been to Minnesota, Savannah, Lake of the Ozarks and New Orleans. My favorite place was Estes Park in CO where I got to attend the Shining Ball at the Stanley Hotel over Halloween weekend.  I think I even heard a few ghosts.  But my dream trip would be to Ireland. We have traced our family tree on my dads side back to County Sligo and I would love to go see where it it.

Overall I dont let my NF get me down, I just deal with any issues that come up because in the end NF is what I have not who I am.