In relational art, the audience is envisaged as a community. Rather than the artwork being an encounter between a viewer and an object, relational art produces intersubjective encounters. Through these encounters, meaning is elaborated collectively, rather than in the space of individual consumption.
In some sense, I view my "Many Faces of NF" project in this way. I am using social media to meet others with NF (and without FB there would be no way possible to do this). Then after the person has fundraised or done some sort of NF awareness campaign, I paint their portrait. And, what I am really doing is simply being a conduit. Rarely does anyone see the actual painting and moreover people do not talk about the actual paintings, they talk about the people portrayed. It's more like I am here simply making introductions. I just happen to use watercolor to do it.
What I am really going to use this blog post for is to highlight my daily Facebook postings. Each day in May I am highlighting a NF Hero and sharing his or her story. The first day of May, I simply shared my page, The Many Faces of NF.
So, beginning on May 2, 2013 here are the postings:
May 2, 2013: Tony MixonMeet Tony Mixon who has NF2 and ran from Jacksonville Beach, FL to Miami Beach FL in 2010 to raise money for NF research. His first symptoms/problems began in 1988. Tony suffered from extreme headaches and dizziness. Upon visiting many doctors and undergoing numerous tests it was determined that heI had a very large brain tumor. After 2 surgeries the majority... of the tumor was removed but not without collateral damage. Tony was left with facial paralysis and deaf on the right side. However, with support of his family and his wonderful wife his life got back to somewhat normal. He was unaware that what he had was considered neurofibromatosis type 2 or NF2. Tony later would undergo more brain tumor surgeries as well and spinal cord tumor surgeries, the latest being in August of 2009. NF2 is a genetic disorder, which affects 1 in 25,000 births.
May 3, 2013: Ayden Wagler
Meet Angie Hovis Wagler's daughter Ayden. Ayden was diagnosed at 8 months of NF and subsequently Pseudoarthosis of the tibia. She had to have her leg amputated because of it. The NF was spontaneous and the family had never heard of it until she was diagnosed. The Waglers raised $5200 in one year for NF research but the following year had trouble raising money mostly because Angie had to concentrate her time on taking Ayden to therapy twice a week. Ayden's mom is quoted as saying "She is the happiest, most energetic, determined, stubborn, smart, funny girl I know.. And she has taught me so much about life and how to live it. To never give up ♥ I'm glad I was picked to be her mom and I wouldn't change a thing about her!! NF is a genetic disorder which affects 1 in 3000 births.
May 4, 2013: Darren KirkMeet Darren Kirk from the United Kingdom. Darren and his two boys both have NF. Darren routinely does NF awareness skydiving events to raise money for the UK's NF Charity, the Neuro Foundation. Last year Darren was able to get 21 people to jump out of a plane with him all in the name of NF awareness. In the process, he and his friends raised just over £6000! NF is a genetic disorder which affects 1 in 3000 births.
May 5, 2013: David GladynessMeet Chef David Gladyness. Besides currently dealing with Neuroendocrine cancer because of the NF, David has been a camp counselor at Camp New Friends since 2004 (NF Camp for kids). He has a family history of NF, starting with his maternal grandmother, his mother, his brother and himself. David elected not to have any children since he didn't want to take a chance on passing it on. David organized a party which resulted in a donation of $13,000 for his local NF group which will be used for his NF family camp in Michigan. NF is a genetic disorder which affects 1 in 3000 births.
Meet Kallie Southwick Enman's son Wyatt. In Wyatt's own words: "Sometimes I feel terrible because the NF hurts. I have tumors that grow inside my body that make it hurt. I have to get a lot of MRI’s to make sure the tumors aren’t hurting my body too bad. Sometimes when I run I can’t keep up with my friends because my legs hurt so bad. I want someone to find a cure for so that I won’t have it anymore and so that I can play along time without getting tired. I don’t like to be sick all the time. If they had a cure for NF, I wouldn’t have to be sick all the time. I want people to know all about NF so that kids like me won’t get made fun of. It’s not fun to go to the doctors and hospitals and have all of the tests all the time. But I know I have to. I have NF, but NF doesn’t have me!" NF is a genetic disorder which affects 1 in 3000 births.
Meet Hirina Garrido Alfaro's son, Tomas. In her country of Chile there is no association or group established for NF, but she is working to change that. She is trying to create an entity recognized by the state to help them financially and with health issues. Currently Chile will not invest too much into rare diseases or incurable genetic disorders. Loosely translated she explained that only those who have money can opt for a good health system. Hirina shared this: "I enjoy each day as if it were the last, his illness sometimes makes me so afraid of losing him, I was kissing his forehead and discovered a lump under against it, my financial situation at the moment is rather complicated and I cannot take him to the doctor. I can only ask God to take care to have money." NF is a genetic disorder which affects 1 in 3000 births.
Meet Theresa Pavesi's daughter Sara. Sara is a middle school student who dances ballet about 3 to 4 times each week. Sara recently won a handmade tutu contest, sponsored by tutus.com, with a blue and green piece she designed and made with her mom. Blue and green are the colors of NF support ribbons, and she’ll wear a version of the tutu when she dances at the NF Hope concert this October in Las Vegas. Sara has tumors in her chest, on her rib cage, under her arm and on her optic nerve. NF is a genetic disorder which affects 1 in 3000 births.
Meet David Groudas. Because of NF, David has a degenerative disk in the lumbar portion of his back which contributes to his spinal stenosis. David also has Chiari I Malformation with a syrinx to which he had to undergo surgery. The results of the first surgery didn't turn out very well, so David had to undergo the surgery again. Besides being a huge supporter of the Children's Tumor Foundation, David finds time to spread awareness by his huge NF sidewalk chalk drawings. The drawings usually spell out "Cure NF" and can take up the entire length of his driveway. NF is a genetic disorder which affects 1 in 3000 births.
Meet Mary Collier's daughter, Lucy. They live in a small town in western Australia. Lucy has an optic glioma (brain tumour wrapped around her optic nerve) that is inoperable and is slowly affecting her eyesight. She has a severe scoliosis that she wears a spinal brace 22 hours a day. She has epilepsy and before medication was having up to 20 seizures a day, now she is medicated she only has around 4. She has Autism and associated learning, behaviour and social problems, she also has ADHD and anxiety disorder. She is starting to grow a few plexiform tumors too. Six months after Lucy's diagnosis the family had blue bands made with NF type 1 on them. Lucy's older sister sold them at school for a donation to raise money and awareness. In fact, their small town raised $24,000 Australian dollars to fund a therapy pool for Lucy. The town has been a fantastic support. NF is a genetic disorder which affects 1 in 3000 births.
Meet Michael Forbes. As a child Michael remember seemingly endless doctor visits exploring treatments for NF. NF slowed him down. He did not walk until he was two and didn't start talking until four. Operations on his hips corrected his walking at age 11, yet doctors advised that he stop playing soccer and riding his bicycle. The school district denied repeated requests from his parents to test him for learning disabilities. He rarely received an A or B. Basically, his childhood taught him that having Neurofibromatosis was not normal and he had to be fixed. Michael has a new project now. Implementing his love for travel, he travels Route 66 meeting others with NF and giving presentations. His personal interpretation of NF is that it can create change every single day. He never knows what will happen in regards to NF, similar to the the unexpected experiences while traveling Route 66. NF is a genetic disorder which affects 1 in 3000 births.
Happy Mother's Day! Let me introduce an amazing mom, Kristi Hopkins. Kristi is a 30 something mom of 6 kids and also has NF1. Kristi grew up in a family where Neurofibromatosis was curse word. The utter mention of it grew guilt and fear in her parents. Understandably so. She was officially diagnosed with NF when she was 33 yrs old. She grew up watching her Mom and older brother struggle with the symptoms, but never had any real issues until after her own diagnoses. As a child, she knew she was different, but no one knew it was because of NF. After symptoms began appearing, even Kristi denied that it was in fact NF.... hiding in her fear. It has taken her a long time, to finally accept the diagnoses, and break the cycle of fear and resentment. Instead of just living with NF, Kristi has chosen to THRIVE! Using the fear and turning it into doing something productive and positive! She has written the book "Thriving with Neurofibromatosis". NF is a genetic disorder which affects 1 in 3000 births.
Meet Anita Power Gribben's son, Bailey. Bailey is 15 years old and has NF2. Bailey describes himself as "a regular kid in honor classes who loves science and volunteering to help developmentally disabled kids in their special basketball & baseball programs". In Bailey's own words: "NF just keeps interupting my life! In 2008 I had a meningioma tumor removed from my spinal cord and in 2009 I had 3 brain surgeries in one week to remove a brain tumor, blood clot and insert a vp shunt. For the past 18 months I have been in a clinical drug trial hoping to do my part in finding a treatment for NF and hopefully one day soon a cure for myself and all the people who suffer from NF. I have to go to the doctor in NYC once or twice a month for bloodwork, checkup and meds. Every 3 months I get a 2 hour MRI of my brain & spinal cord, to monitor the tumors that I still have - and an eccocardiogram and audiogram. I am now involved in the NF2 natural history study at NIH (national Institute of health), where I will go for testing every 6 months for 5 years, to help doctors and scientists to study and understand better and hopefully one day lead to treatments and a cure for NF! We NEED to find a cure and research medications to stop these tumors from growing REALLY SOON. I have BIG plans and dreams and I will NOT let NF2 stop me from doing what I want to do." NF2 is a genetic disorder which affects 1 in 25,000 births.
Meet David Oosterloo. David is from the Netherlands and has NF. His NF has manifested itself in several different ways including having about 7 or 8 neurofibromas (bumps). One is pretty big on his lower lip, where it hangs his lip down and has affected his teeth. This is actually the most tedious fibroma not because it hurts, but because he looks "different" because of it. The NF has also given him scoliosis. The doctors put it locks with two iron bars in his spine to help out, so they won't grow together. The downside is that his shoulders and lower back are taxed more. David's lung capacity is 70% and tires more quickly than other people. David has droopy eyelids and has difficulty reading something from long distance. For several years he has suffered from hyperventilation and panic attacks resulting from NF. David, who enjoys building websites, has started an online NF support group www.watisnf.nl to get everyone involved in NF awareness. He also has chat rooms and places for people to vent or exchange ideas about where to get the best treatments. NF is a genetic disorder which affects 1 in 3000 births.
Meet JoAnne Pastel's daughter, Jacqueline. Jacqueline has NF1 due to a spontaneous gene mutation. Jacqueline's mom, JoAnne, is consistently raising money and giving for the cause of NF. JoAnne is a Twin Cities children’s author who wrote “Bur Bur & Friends,” which features young characters with disabilities and medical conditions. But, to accomplish more for Jacqueline and other children with NF, JoAnne joined the Board of Directors for the Children’s Tumor Foundation, a group dedicated to “ending neurofibromatosis through research.” Jacqueline has multiple café au lait spots, a plexiform neurofibroma on the back of her head, a neurofibroma on the tip of her tongue, and a slight bowing of her left arm. However, Jacqueline is a typical preschooler with lots of energy and charm who is always trying to keep up with her 10-year-old brother. NF is a genetic disorder which affects 1 in 3000 births.
Meet Rebecca Schultz- Stolzenburg's son, Nick. Nick's NF was caused by a spontaneous gene mutation. Last year, Nick was diagnosed with cancer. On Dec.10, 2011 he had a tumor removed from his scalp. On the 19th, they called to tell his mom it was malignant peripheral nerve sheath tumor. Well, after more MRIs, a bone scan, a PET scan, more biopsies, & a mediport placed in him- he received his first round of inpatient chemo on Jan 23, 2012 (4 days, 3 nights). His next round of chemo was put on hold because he had to get surgery to remove the tumor in his neck, near the left carotid artery. His case was presented to a sarcoma board at St. Jude's hospital & Roswell & they all agree that the tumor needs to come out whether its benign or cancer. Rebecca and I wanted to paint Nick with all of his wonderful hair since he lost it all during chemo. As of one year ago, the doctors said that there were NO cancer cells and Nick's hair is finally starting to grow back. In his mom's words: "We continue to be extremely thankful for Nick's positive & incredible attitude through all of this. He is such an amazing young man with strength most of us could only wish for!!" NF is a genetic disorder which affects 1 in 3000 births.
Meet Siobhan Clarke. She was diagnosed with NF1 at the age of 4. The doctors told her mom that she wouldn't live past 6 years old. Not only did she prove them wrong, she has endured quite a bit because of NF. In her words: "I am legally blind in my left eye, have NO depth preception, EXTREMELY limited to no periphreal vision, and SEVERE loss of field vision in my right eye. I also have a tumor on my optic nerve and my pituitary gland. My body is covered in hundreds of CAL spots and tumors; above and below the skin, but my brain, head, scalp and spine are the most effected-(my spine is covered in teeny tiny tumors). I've also had 28 surgeries. I spent 3/4 of my childhood at A.I. DuPont Hosptial for Children in Wilmington, DE seeing 16 specialists for my NF. Growing up was the most difficult challenge of them all. I had not one single friend. Everyone made fun of me and called me names like: tumor girl, tumor head, mountain range, lumpy lacky, one-eye, cyclops, polka-dot **** breath; I can go on. One time I was at the park by my house and about 10 kids surrounded me and threw rocks at me, spit on me until my Mom came up and freaked out and she got in trouble. I was thrown down a flight of steps, had lockers opened on my blind side and above me so when I moved I would hit my tumors or walk into it bc it was out of my sight range, tripped! I look back at all of these events; and I think, WHY?" NF is a genetic disorder which affects 1 in 3000 births.
Meet Michelle R. Singh's daughter Kaitlyn. Currently, Kaitlyn is on a weekly dose of interferon which is a low dose chemo to help shrink her plexiformas with the hopes of stopping the progression of her NF. NF isn't slowly Kaitlyn down too much as she is an honor roll student and loves karate. In fact, she just earned her gold belt recently! Last year, Kaitlyn's family participates in the CTF Race for a Cure program. The Racing4Research™ (R4R) program utilizes competitive, professional auto racing as a vehicle to increase awareness of neurofibromatosis and raise funds for research through corporate sponsorship, personal donations, and individual fundraising by NF Heroes: children and adults from around the country who live with neurofibromatosis. The Racing4Research program offers children and families living with the disorder a uniquely empowering weekend, and has raised more than $2 million dollars since its inception five years ago. NF is a genetic disorder which affects 1 in 3000 births.
Meet Dara Dandrea-Giannotti's daughter, Grace. Several years ago, Grace went to the ER because she was losing weight and within hours the family had an MRI that confirmed she had a PNET (medulloblastoma). She went through massive amounts of chemo as well as a stem cell rescue (they froze her stem cells then at the end of her 6 rounds of chemo wiped out all her bone marrow and gave her back her own cells to regenerate). She managed to make it through all that only to have it return in 2009. This time they did chemo but they wanted radiation as well, they were told as an NF patient she was at twice the risk for secondary cancer from radiation treatment. Learning about proton radiation and its lowered risks, Dara asked her docs who agreed that would be the better option for her but there were only 5 centers in the whole country, not all did children nor would take our insurance and they doubted we could get into one in time. Dara moved mountains and got it done. In Novemeber of 2010 Grace had a stroke, we were told that the full brain radiation she had to get done was now damaging the blood vessels in her brain and causing a condition they find in NF called moya moya, they knew there could be these effects but it seemed that they were finding it was accelerated in their NF patients. She has been having mini strokes and is on meds and oxygen treatment as needed and has so far had 2 cranial bypass surgeries to move arteries into her brain from her scalp to replace what is disappearing. So far she is doing as well as can be expected and we have a long road ahead but Grace smiles through it all and in an inspration to all around her and shows no signs of letting this keep her down. NF is a genetic disorder which affects 1 in 3000 births.
Meet Julie Hanson's son, Jeff Hanson. Because of NF, Jeff is visually impaired from an optic nerve tumor (he nick-named "Clod"). The tumor started causing severe vision loss in 2005, and Jeff received radiation and chemotherapy in 2005-2006. Jeff never had a "pity party" about his medical condition. He kept a great attitude throughout his treatment, despite losing his hair and all the usual "chemo" side effects. Jeff said good-bye to his home school friends, and spent three years at the Kansas State School for the Blind. He took all of this in stride, and used humor, creativity, and a headlong immersion into his artwork to defeat "Clod." On his last day of radiation, Jeff showed up for treatment in a tuxedo! "Clod" was not going to win--or be taken seriously. Jeff started painting watercolor note cards when he was 12 years old to raise money for NF. It was a hobby since his visual impairment prevented him from doing sports and the usual kid stuff. Jeff's art was totally abstract, with bright bold colors. His vision did not permit him to create any concrete images. But his color combinations were explosive! His mom then bought him some acrylics and canvas and the entire Hanson family is proud to announce that as of last week Jeff's artwork has generated over ONE MILLION dollars for charity and he is only 19 years old. Jeff isn't just some kid down the street who lost his vision because of an NF tumor, he has redefined himself. Jeff is an artist and a philanthropist and an inspiration. NF is a genetic disorder which affects 1 in 3000 births.
Meet Sheila Bouford-Cohoon's son, Nic. He is 4 yrs old, he is beautiful and he has NF. Nic's NF symptoms are a bilateral optic "thickening" gliomas, 9 degree curvature of his spine and the biggest issue is his low muscle tone. He gets PT and OT for his low tone along with doing karate once a week. He has come so far from where he was and they couldn't be prouder of the person he is becoming. He has his dad's love of cars and his mom's love for everyone. Sheila relates that "Life isn't perfect for anyone and no one ever said that life was fair. We live in today. Tomorrow is not a guarantee for anyone and we try to enjoy each other as much as we can". Additionally, Nic has inherited his Uncle Doug's way of retaining everything. His uncle was known for his motto "LIVE LIFE"! And Nic and his family are doing just that while consistently raising NF awareness along the way. NF is a genetic disorder which affects 1 in 3000 births.
Meet Marianne Hughes Mick's daughter, Izzy. As an infant, a neurologist erroneously told the family that Izzy had a rare disease and would not live to see her third birthday. The neurologist was wrong, what Izzy had instead was NF1. On March 18th, 2009, the day before her 3rd birthday, Izzy had surgery to place a port in her chest. Chemo was started that evening. Hours after she received her first round of chemo drugs, her little body began attacking her immune system. Izzy handled all of the subsequent drugs very well and completed the chemo. Unfortunately Izzy has 2 new tumors to watch; one on her brainstem and a plexiform tumor on her face. In Marianne's words "Some days it feels like we will never have a normal life. I want to complain about ear infections...We have tried to keep life normal, but normal is hard when you spend hours in a car to get to appointments and hours getting chemo each week. We also struggle to make sure that her older brother, James, is not getting lost in everything that is going on. Our lives have been turned upside down. At times, I feel like I am drowning." But the Micks have not let NF get the best of them. They have organized the successful yearly fundraiser "Izzy's Tumor Trample" with all proceeds going to the Children's Tumor Foundation. Additionally, Marianne helped create the NF forum "NF Moms Rock!" which allows moms (and dads) to swap information, ask questions, share treatment ideas and trial information, discuss medical information and pretty much serve as an overall support group for any parent who is trying to navigate how to raise a child with NF. NF is a genetic disorder which affects 1 in 3000 births.
Meet April Anderson's daughter, Dakota. Dakota was born June 26, 2005. She was just a couple of weeks old when her mom first noticed what I thought were 2 birth marks on her leg. At her 2 month check up she pointed them out to her pediatrician. The pediatrician seemed a little concerned and measured them and noted them in her file. She called them cafe au lait spots. She told me that we would watch for any more and then told me a big name, that I could later not remember, and said that this could be what the elephant man had. April mused that she laughed to herself and thought how could 2 flat brown spots turn into what the elephant man had? It turned out that Dakota was diagnosed with NF1 due to a spontaneous gene mutation. (Elephant man did not have NF, he had Proteus syndrome.) When Dakota was about 18 months old she started having balance problems. A couple of times a month she would have trouble walking and holding herself up. One day she could not stand up in her crib. She kept falling over and over as she was trying to get up. April called the doctor and she said take her to the Emergency Room. They did a CT scan and found a mass in her brain. Later to be diagnosed, with an MRI, as a hypothalamic chiasmatic glioma (brain tumor) involving both optic nerves and tracts. The family was devastated. After getting MRI's every 3-6 months for the past 4 years, it has been decided to go ahead and treat Dakota with chemotherapy to slow down the growth of her optic glioma and try to save her vision. Dakota lost all the beautiful hair that you see in the portrait, but her chemo is now over and her hair is coming back in. The Anderson family is very involved in raising awareness and funds for the Children's Tumor Foundation and specifically for the California Chapter of NF. NF is a genetic disorder which affects 1 in 3000 births.
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