Monday, August 22, 2016

Case Study #32 - Darin Providing Technical Support

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Darin Donahue lives in southeast Michigan and works as a freelance broadcast technician. He does a lot of work for the local PBS station along with working a lot of sporting events for various sports networks. His favorite being the Lions / Bears rivalry game. When Darin was born, he had a number of  cafĂ©-au-lait-spots. His mother always said they were "the doctors thumb prints,” but he wasn’t officially diagnosed with NF1 until he was about 13. No one else in his family had it, so it was caused by a spontaneous mutation, as half of the NF cases are caused by that.

School was a constant struggle for Darin. Having dyslexia made math and reading problematic and something he avoided at all cost. He struggles with diminished concentration and a very poor memory, and has balance issues.  It wasn’t until about twelve years ago that he noticed his skin tumors increasing but waited a few years to seek out an NF specialist to have them checked out. Truthfully, he really didn’t think much about it as he was leading a relatively normal life, until his oldest brother inquired into why did he have all the skin issues and tumors. His brother is about eight years older than Darin but had no idea that his youngest brother had NF or even what having NF meant. Even though Darin was seeing a top specialist in the area, his brother was convinced he wasn't doing enough to learn about it. At that point, Darin became actively involved with the NF community, and started going to NF sponsored events, seminars, focus groups and NF walks. In 2015 & 2016 Darin participated in the Cupids Undie Run in Detroit raising $600 and has already signed up to run again in 2017.

Wednesday, August 17, 2016

Case Study #31 - Emily Tossing a Water Balloon

Prep Sketch for Emily Tossing a Water Balloon
Emily Pfeiffer was diagnosed with NF when she was three years old. At the age of nine learning difficulties prompted an MRI which revealed a brain tumor. The tumor was not responsible for her learning difficulties but it did require surgery and radiation therapy.  She did relatively well until the brain tumor returned in her early twenties. The tumor was successfully removed but she went on to develop tumors deep within both the right and left sides of her neck. She endured multiple surgeries and life threatening complications throughout her twenties and thirties.

Her unbelievable positive attitude and resilience despite her NF has been a source of inspiration for her family. Emily has walked in three half marathons and the Cupid Undie’s Run to increase public awareness and fundraise for the Children’s Tumor Foundation. She currently volunteers at Tabitha Health Care in Lincoln, Nebraska. Spending time with the elderly is a joy for her and the residents she interacts with. In April of 2016 she received an award at Tabitha’s annual volunteer recognition event. The award honored her for making and keeping her commitments to her volunteer work.

Emily would be the first to tell you living with NF is very hard. She doesn’t seem to worry about what her future holds. Living every day to her fullest despite the physical and cognitive challenges continues to be her primary focus.

Friday, August 12, 2016

Case Study #30 - Derrick Living Rugby


  • Prep Sketch for "Derrick Living Rugby"

    Derrick Helton has seen and learned a lot from his condition with NF2. Coming from a small farm outside a village of 110 population called Tuscumbia MO, he did not know he had NF2 until he was 18 and decided to join the Marine Corps. During processing he failed the hearing test and when pursuing a waver to join the doctors found tumors on both acoustic nerves. At the same time a large tumor in the C3-4 regoin of his neck area spinal cord was found and severely pressing on his spinal cord. Obviously he did not get into the military as he had planned and could not work his trade of concrete construction anymore, but his life was about to change dramatically in another way. Just after being found emergency surgery was decided to prevent a serious injury at that level which could be life threatening. During surgery another tumor in lower spine combined with spinal swelling from neck surgery resulted in paralysis from about the rib cage down. The nerve in which the neck tumor was connected caused some upper body function decrease as well. After a long recovery and reflection the signs of NF2 had been present from very early age, but always misdiagnosed and never found. Now living as technically a quadraplegic and wheelchair bound, it was decided he needed to find a new path and way of life. He found the sport of wheelchair rugby as well as a college, The University of Arizona, which asked him to come play. It was the beginning of a new life and great adventure. Not long after he became good enough to represent Team USA and won many gold medals, world championships, and a bronze medal throughout his ten year run with the team all while traveling the world playing. In 2015 his career was cut short when once again NF2 showed its evil side and started causing seizures, a massive decrease in hearing and other issues. Now retired and trying to fight the new issues he has seen a dream of a new journey that involves community outreach as well as NF1 and NF2 awareness. Blessed with a given cup of lemonade from a lemon he feels its time to use what he has been through as a foundation to help others in bad situations pursue life to the fullest! Currently he lives in Tucson, Arizona with his amazing wife Krista, and their awesome daughter Leila who is 2 years old. Soon he will be having his first brain surgery to combat the siezures and also plans to have an ABI placed to help his poor hearing. He will continue planning his dreams and takes it one day at a time. It's time to become an advocate for NF, NF2 and all who suffer. It's also a time to use the gifts he has left to do so in new and creative ways. Follow Derrick on Twitter: @derrick_helton

Tuesday, August 2, 2016

Case Study # 29 - Khanyi Swinging on the Porch


Khanyi Swinging on the Porch - oil on canvas. 30" x 24"
Growing up in South Africa where Neurofibromatosis is very rare, or just goes unnoticed, and having gone to an all girls’ school, where one’s physical appearance is under constant scrutiny was a challenge for Khanyi Shabalala.

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Khanyi was the first and the only carrier of NF in her family so it was a new experience for everyone involved. The first time her mother noticed birthmarks on her was when she was five year old. At first her mother found it a bit peculiar but not alarming. She noticed that they continued to develop and multiply until Khanyi had all these birthmarks suddenly developing all over her body and yet her twin sister did not. She didn’t know what was going on so the marks were put under the broad “birthmark” umbrella. Around that same time Khanyi developed absence seizures but she is still not sure if there might have been a correlation between that and her NF. At 12 years old Khanyi finally went to the dermatologist the “birth marks” were continually growing, continually changing and now they were accompanied by tumors. Those "birth marks" are called cafe au lait spots and are one of the main indicators for a possible Neurofibromatosis diagnosis.

Eleven years ago while Khanyi was studying Political Science at the University of Westville in South Africa she came to the realization that it was not her calling, not something she was destined to do for the rest of her, life so she packed her bags and moved to the United States. When she arrived she enrolled at Otis college, a school of art and design and worked as a freelance stylist. At Otis she met her future business partners Amaka and Jason. Together they turned their innate creativity and vision into something that was truly their own, something they could be proud of. That was how Khanyi became the Fashion Editor and one of the founding members of Afrostyle Magazine.

Monday, August 1, 2016

Case Study #26 - Maximilian Shopping in Thailand

"Maximilian Shopping in Thailand" 30" x 24" oil on canvas.
Maximilian Eugene Salvador Moran lives in Duffield, a small village in the countryside in Derbyshire in the United Kingdom. He found out that he had NF when he was 6 months old due to the large cafe au lait spots on his leg. At first he didn't know the full gravity of the situation or the effect it would have on his life but didn't let it stand in his way! As he grew up he had many problems fitting in with others and a having a 'normal' way of life. Even though he had NF he still tried to fit in with the other kids and do as they do. Including football clubs, chess clubs, singing and acting schools, piano etc.

NF affected him in some ways. Multiple areas which were always painful and have required surgeries, medication and regular scans to check on all tumors and check nothing was wrong internally! Also had to deal with bullies for most of my childhood and even today he still get the odd buffoon still trying to dampen his spirit. He had spinal surgery at 20 years old before travelling to Tenerife to do a summer season working in bars.
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Maximilian feels very fortunate to live where he does as he has the NHS which despite its faults is a great healthcare system for someone suffering with NF. They keep me checked up with regular GP appointments and he travels to London to see the specialists. Maximilian has also had a career spanning many fields: bricklaying, security guarding, landscape gardening, and now a fulfilling career in catering. Currently, Maximilian works as a chef and has worked in some of the nicest hotels in the areas in which he has lived. He has done a lot of travelling: backpacking in south east Asia and viewing the northern lights in Iceland. After his trip to Asia, he had to come back and have a tumor removed from his sciatic nerve. 
Maximilian is looking to the future, "I have ambition to open my own restaurant one day. I want to open a.little tea room and also provide an external catering service for weddings, birthdays and other personal events!

Wednesday, July 27, 2016

Case Study #28 - Nena Picking Oranges

Nena Picking Oranges. 30" x 24" Oil on Canvas.
MaElena (Nena) Gomez has NF, lives in Monterrey, Mexico and has been married 40 years with her husband Carlos Garcia. It wasn't until she was married and already had two daughters that she found out her diagnosis. In Mexico, not much is known even to doctors about neurofibromatosis. Her daughters and four grandchildren are the engine of her life. Nena's hobbies are cinema, enjoying nature, and the face and happiness of her grandchildren.
Nena Picking Oranges

One day Nena was talking with a young person about suicide because life with NF is difficult. He felt that no one would want him, even had friends that didn't take to the idea of forming a tumor by his face. In Mexico there just is not a big priority placed on NF and people do not go to specialists because they have it. Over time, Nena realized just how many people also had NF and to her great surprise throughout the world there is a lot of information about it. There is also a lot of misinformation as well and that is where she decided to get out and start working at raising awareness. Nena has spearheaded the one protection law draft that has to go through the congress of Mexico. She has met with two senators and in the meantime she interviews and continue to fight to make society aware about the disorder. There is more information for all doctors, patients, families and society in general that are like them with a genetic condition. She finds others with NF and together in her words, "we laugh, we cry, we must work to live, or the same needs as the rest of the world. My challenge is to keep working at it, in honor of my father who inherited it, to patients to keep hope alive, and to know that we also have a challenge to work together for attaining the transformation of society. for a world without DISCRIMINATION more aware, and we are all happy fundamental right of every human being."

Saturday, May 14, 2016

Case Study #27 - D. Anthony Lifting Weights


D. Anthony Lifting Weights - 30" x 24" Oil on canvas
D. Anthony Evans  knows what it takes to face down life’s biggest challenges and beat them. As a child of a single mom, D. Anthony was born with Neurofibromatosis (NF) a rare genetic condition where dangerous tumors grow on nerve tissue. Often benign, they can, however, become malignant, resulting in what is called a Malignant Peripheral Nerve Sheath Tumor (MPNST). A MPNST is a terminal aggressive sarcoma form of cancer.

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In 2012, D. Anthony was diagnosed with MPNST. This manifestation has had him had to endure nine life-or-death surgeries, the first seven of which were completed within the first eleven consecutive months. To date three hundred and twenty-five tumors have been removed from his body with the largest being two pounds and 7cm. The doctors gave D. Anthony six months to live. Life expectancy post operation for MPNST is zero to six years. Six years if detected and caught early and zero ninety-nine percent of the time when the tumor is 2 lbs 7cm like his measured to be. But there are those who survive.

It has been over four years since his surgery and in  D. Anthony's words "I'm blessed and grateful..So don't you dare think about giving up. I am your tangible proof that everything is possible! So no matter what your facing, keep your hands up, your head tucked and don't you dare stop swinging until it's over." #Train2Live #Eat2live