Saturday, May 20, 2017

Case Study #40 - Brian Reading a Mystery Novel

Prep sketch

Brian Peterson was born in Des Moines, Iowa where he lived there until 1993 when his family relocated to Cincinnati, Ohio. When he was 9, Brian was diagnosed with Neurofibromatosis (NF) type 1. Brian's family ended up returning to Iowa after 2 years. due to complications of NF.

At the of 4, Brian competed in the Special Olympics. While growing up, Brian had never met anyone with the same disorder. He faced many challenges growing up with NF1. He had many learning disabilities, including attention deficit hyperactivity disorder, along with a speech impediment. During adolescence, Brian suffered trauma from a brain injury, which lead to the discovery of a tumor on his brain. He had always struggled with severe anxiety. He fell into a deep depression and at the age 13. Brian attempted to take his own life. NF also caused other physical issues such as deformed and weakened bones. Brian has had broken fingers, wrist, leg & ankles, and endured an ankle replacement surgery. He also has had tumors removed from his heart and brain.

Brian always felt like an outcast. He struggled to make and keep friends. Not being able to cope with NF, he often acted out in defiance. Bullies terrorized him. Brian was once jumped on the way home while riding the school bus. He was beat with chains while another teen stomped on his head, resulting in a concussion. By 10th, grade Brian had become disconnected from others, often not speaking.

Brian struggles to get and keep jobs. The anxiety caused by others staring at his facial tumors as well as his hands tends to affect his work. In addition, NF has caused issues with Brian's mobility, such as being unable to stand for long periods of time.

When he was 24, Brian married the love of his life, Kristen Peterson. They currently live in downtown Des Moines. Brian has been an advocate for NF for many years and is currently involved in many of the Children's Tumor Foundation's awareness projects including the upcoming NF walk held in Des Moines.

Wednesday, March 8, 2017

Case Study #39 - Larry Shopping for Grapes

prep sketch for painting
Having NF as a child, had its struggles. Larry was made fun of a lot for being short and skinny. The scoliosis made him shorter than others in school so they pushed him around. Back in the 60’s, he just had to deal with it, he didn’t dare report it or his life would have been worse. He also struggled in math. He had bad memory problems and still does. He just never could understand and get it. He was so excited when he graduated and was done.

Larry's mother passed away a year after he graduated high school. She was 45 and he was 17. She was a quiet lady and never discussed NF with him. She had fibromas all over her body. Larry knew he had it too but didn’t ask her as she avoided the conversation. When he was in his early teens, his mom was diagnosed with breast cancer, she waited too long for treatment and it eventually took her life. Larry lived with his sister for about a year after their mother's death, until he found a job and apartment. He is thankful that his sister does not have NF. She really helped him transition from being a young teen to living on his own at 18.

Larry didn’t start getting fibromas on the outside of his body until in his 20’s. Scoliosis had a major impact on his life so any type of sports were out of the question. He found a great Neurologist that knew all about NF and understood the problems people can have with it. He started taking x rays and MRI’s of his back and brain. He prescribed me some medications to help with the pain and a brace wrap to help with support since it appeared his ribs were supporting his scoliosis at an 80 degree curve which is why he was hurting all the time. Any corrective surgery was out of the question, it would be a high risk since he has a meningocele on his spine. I have to be really careful, the doctor said not to fall, sneeze or cough hard, not wanting the meningocele to leak spinal fluid. The brain MRI discovered UBO’s in his brain (Unidentified bright objects). They say all of us with NF have UBO’s, they just have no clue what they are. Also at the base of his brain and spinal cord there is a Posterior Fossa Arachnoid Cyst. Larry gets tired and short of breath if he stands for any length of time or walks. His ribs hurt due to the scoliosis. He uses a cane for support, helps some take the pressure off. For any distance he uses a power chair, at the store or at the park.

Larry got married at 25, and had a daughter a few years later. He was so glad she was born without NF. Sadly his marriage ended a few years thereafter. A year after his divorce his ex-wife was diagnosed with MS and she passed away 10 years later. Larry remarried and had another daughter with his second wife. She also doesn’t have NF. Sadly, his second marriage ended after 12 years. Being depressed the he would never find anyone, he found the Children’s Tumor Foundation's website. They had a link where there were others that had NF like him. He talked with others and found comfort as they all understood each other. Then there was one lady, Joan, they connected. She lived in PA and he lived in MS. They started talking on the phone, and he made a trip up north to see her. A year later she made the big move to the south and year later they were married. Larry is thankful for her. They are both involved in the "Great Steps for NF" walks put on by Neurofibromatosis Network. They have participated for four years and plan on continuing to raise NF awareness.

Thursday, February 23, 2017

Case Study #38 - Cecile Playing Badminton

Prep sketch
Cecile Hernandez Pesayco from the Philippines was was born with a lot of cafe au lait spots on her skin. As a child, she was very active and loved playing and running around. Sometimes she experienced severe headaches that made her stop what she loved to do. When Cecile was 13 years old she noticed lumps starting to grow on her skin. As she got older, the lumps started to grow in large numbers. She doesn't have NF only on her skin but under her skin as well. The tumors under her skin got bigger and started pressing some nerves which makes living with NF painful. Doctors said the tumors have to be removed. She has already had 8 operations to removed those specific tumors. Some of them turned out to be malignant and needed some radiation. None of that stopped Cecile from living a normal life and from doing the things that she wants to do.

As Cecile looked for answers to what Neurofibromatosis(NF) really was, she found not just an answer, but a friend, Kcat Yarza. She also has NF and together they formed the group NF Friends Philippines which has over 100 members including parents of children with NF. They try to support each other by focusing on the blessings that they receive each day and hope to raise awareness about the disorder. Despite the nerve damage NF has caused, Cecile loves playing badminton and she plays it almost everyday!

Thursday, February 2, 2017

Case Study #37 - Nichole Ringing in the New Year

prep sketch
Nichole Servos was diagnosed with NF at the age of 8 due to having a few skin tumors that required medical attention. Her parents had never heard of NF before she was diagnosed (no other family member has NF) and thus was told by the family doctor at the time it was a non-threatening/non-life changing disorder.

Nichole’s childhood years were lived as any other normal childhood, with NF never in the forefront of her mind or those of her parents. At the age of 16, Nichole’s world drastically changed when, while recovering from a severe case of pneumonia, she lost hearing in the left ear. After a battery of tests it was discovered that she had several brain tumors (acoustic neuromas which resulted in a diagnosis and confirmation of NF2), one which had already claimed its prize and would need to be removed, and another needing action to keep it from staking its own claim to the hearing on her right side. By the time Nichole reached the age of 18, NF had created a new chapter in her life, leaving her completely Deaf to sound and looking for ways to fit into both the hearing and Deaf worlds. Despite the toll NF had taken, she continued to lead a fulfilling life, graduating high school, attending college, living on her own and eventually marrying her high school sweetheart.

For 13 years, NF spared Nichole and laid “dormant” until it threw another curveball shortly after her 30th birthday. She began to have facial weakness on the left side. The cause was the brain tumor which had already been removed after it staked its claim on her hearing; it had come back for more and now claimed one side of her face along with another tumor on the opposite side waiting in the wings to take the right side of her face. Needless to say, NF brought a rash of procedures and hospitalizations, 6 brain surgeries within an 18-month time span, and left her literally expressionless. Among her many procedures, she has since received is an ABI (Auditory Brainstem Implant) which helps her “hear” sounds again, and Facial Reanimation surgery which has restored part of her facial functions. NF hasn’t stopped there. Its latest claim has been that of her spine with several tumors on/in the spinal column which have needed removal, required rehab and left her with a little hitch in her step. Despite all the roadblocks of life, Nichole keeps a positive outlook due to the outpouring of love and support from all her family and friends, as well as her strong faith.

NF has claimed the sound from her life, put a hitch in her step, and has taken the true smile from Nichole’s face, but it will never take the smile from her heart as it looks to the future in hopes that one day a cure can be found for her and others like her who live with NF. That is why Nichole has become actively involved with the national Neurofibromatosis Network. She also currently serves as the President of the NF Central Plains chapter, participates and supports the NF advocacy program, and for the last 10 years, has helped raise more than $30,000 for the NF Network. She is happily married and resides in a small town in Southeast Kansas.

Friday, January 6, 2017

Case Study #36 - Yvonne Dancing Ballet

"Yvonne Dancing Ballet" 30" x 24" Oil on Canvas
Yvonne Foong was born in the city of Petaling Jaya, Malaysia on June 5,1986. Her father was a landscaper, while her mother was a florist. I was born a healthy child except for an underdeveloped left eye. Three years later, her father suffered a brain hemorrhage. He woke up after 1 month in a coma and lived with his damaged brain for another 21 years. As Yvonne grew up, her father's mental capacity gradually and steadily declined. He tried his best to take care of her but he had poor emotional regulation ability and was very forgetful. Her mother was overwhelmed and collapsed. She also tried her best to raise Yvonne while having to care for her father. Yvonne went to school and grew up healthy. Her aunt protected her early childhood development by spending quality time with her and teaching her many things. She introduced Yvonne to: ballet, figure skating, art, music and just about anything she wanted to learn. Her mother, despite her own helplessness, also trained her to become independent using simple ways such as allowing her to go buy food in a mall by herself since she was a toddler.
Prep Sketch for Yvonne's painting

When Yvonne was 13 years old, her own health started declining. She lost her hearing within a year and started falling down for no reason when she was 14. Her mother at that time was facing a lot of challenges and emotional stress, so when Yvonne told her of her problems, she could not deal with it. This continued until she could barely walk at age 16 and was finally taken to the doctor whereupon countless tumors were found in my brain and along my spinal chord. She was diagnosed with NF2. Yvonne had her first 2 surgeries in Malaysia immediately to try saving what was left. The doctors there, could not remove the brain tumors completely and safely so, she needed to look for alternatives. Another patient she met online, introduced Yvonne to his surgeon, Dr. Rick A. Friedman in Los Angeles who volunteered to remove it for her for free. Since that surgery, Yvonne resolved to go back to him for my future surgeries to remove other tumors in the years that followed, but the hospital and the surgeons were not able to do her future surgeries for free. She could understand that as they also have other patients they need to help. Yvonne's life experience with her father's fate makes her determined to maintain her own quality of life no matter what it takes, for she has seen and knows what will happen if she deteriorates and become dependent. Yvonne decided to raise the funds needed for surgery by her own efforts. Someone helped her design a T-shirt and she sold it piece by piece, at a modest price of just RM30 a piece. When someone agrees to buy, it makes her feel very happy because she was earning the money with her own earnest efforts. She needed RM230,000.00 for surgery, back in 2006. Initially, people ignored her on the streets, but slowly more and more people supported and came forward to help her sell by consignment. Within 10 months, Yvonne managed to raise enough funds for surgery. This was back when there was no social media and no one has heard of her before.

Yvonne continued to raise funds this way for her future surgeries in the US. Fundraising got easier and easier and faster too. In the process, she also turned into a public speaker and inspiration. Many people with all kinds of life challenges also came to her for assistance throughout the years. She tries to help them physically and monetarily, including NF patients.

Yvonne realized that she needed a proper way to help people. So she decided to set up a foundation to help other patients with NF get life saving treatments in the US. Now they can have a chance to extend their lives and also empower themselves in the process. Just like what Yvonne did.

Thursday, January 5, 2017

Case Study #34 - Kevin Leading the Charge

Kevin Leading the Charge. Oil on Canvas. 2017. 30" x 24"
Kevin Allison is from Pittsburgh, Pennsylvania and for as long as he can remember, he has had NF. For some living with NF is a curse or a punishment, but Kevin doesn't necessarily see it in that way. It's more of a blessing in disguise. Kevin feels like he can't really complain since he has a mild case of it and feels very fortunate. He has café au lait spots, neurofibromas under his skin, and a stable optic nerve tumor. He used to suffer from weekly migraines.

Prep sketch
If it wasn't for having NF, Kevin wouldn't have had some of the life experiences he has thoroughly enjoyed. He attended an NF camp twice where he made a ton of friends. During that time he saw the Grand Canyon and white water rafted down the Colorado which ranks as one of his favorite life experiences. Kevin will be participating in his 4th Cupid's Undie Run. Besides being a ton of fun, he gets to join 1200 other people whom he considers family who also want to find a cure for NF. They do this by running through the streets of Pittsburgh in the freezing cold in February in their underwear. The main reason for the run is bringing awareness to NF. There is no cure but this is certainly a way to stand out. It definitely puts a smile on his face to see everyone come together for such a great cause. The best part of last year was being able to carry one of the Cupid's Undie Run flags at the beginning of the race. It was definitely a great feeling and an honor.

In Kevin's words, "It's an amazing feeling to have the love and support of friends and family. I believe I have become the person I am today because of NF. I have many experiences I wouldn't trade for anything and have met many people along this journey I can call family. I aspire to bring awareness to many and continue to raise funds with the hope that one day a cure will be found".

Friday, December 9, 2016

Case Study #35 - Elana Scooping Ice Cream

Elana Scooping Ice Cream. 30" x 24" Oil on Canvas.
Elana loves ice cream — not just eating it, but scooping it. That was her summer job before starting college.

The years leading up to that point were challenging, exciting and interesting for Elana. She was diagnosed with Neurofibromatosis Type 1 at age 3 due in large part to her cafe au lait spots. Elana grew up in Texas where she enjoyed a childhood without medical complications. During a routine MRI when Elana was 11 years old, her NF specialist discovered a brain tumor. The surgery to remove it was successful, and she was released from Children’s Hospital in St. Louis on her 12th birthday.

Prep sketch
Having brain surgery made Elana more aware of NF and empathetic toward others with the disorder. She began sending personalized care packages to children in the NF community who were undergoing surgery or treatment for their tumors. Over the next two years, Elana would send over 100 packages to children in over 25 states!

Elana’s involvement in the NF cause grew as she herself grew. She served as a counselor-in-training at Camp New Friends (a camp in West Virginia for kids with NF), helped narrate a national video to raise awareness, and did fundraising by selling duct-tape wallets that she made herself. Most importantly, she advocates for NF research dollars on Capitol Hill in Washington, D.C. with the NF Network, a national organization that leads the advocacy efforts to find treatments and a cure for neurofibromatosis.

Besides scooping ice cream, Elana enjoys baking, working jigsaw puzzles, and traveling. She has visited all 50 states.