Save-My-Brother
YOBRO!
Save My Brother,
- train tracks photo by jack algers
David Faircourt perseveres
A pottery sale at Anam-Cré Art Studio will raise funds for a kidney transplantBY MARIN KAUTZ
Most children who have Alström Syndrome lose their eyesight by the age of three; between five and ten years old, their hearing starts to diminish; and somewhere between the ages of 12 and 15, much more serious health concerns begin"”diabetes, high blood pressure, cholesterol problems, liver and kidney failure, lung and heart problems. The devastating genetic ailment is extremely rare: Only 700 children from 47 different countries have been diagnosed with it. However, by some twist of fate, two of the four children in the Faircourt family of San Luis Obispo are among those 700.
HANDS ONShevon Sullivan, owner of Anam-Cré Art Studio, will host a benefit for David Faircourt. PHOTO BY STEVE E. MILLER Most victims of the disease succumb before the age of 21. David Faircourt is now 24 years old and intends to complete his associate degree program in broadcasting, become a radio host or TV interviewer, and continue his study of ceramics. Faircourt finds joy and self-expression through creating pottery, performing music, and painting. In a show, supported by his friends at Anam-Cré Art Studio, he will share his passion for art in a sale of ceramic work on Sept. 3.
During the monthly Art After Dark event, the studio, which is located in the Creamery downtown, will host a special presentation of Faircourt's work and the work of other students who are donating pieces for sale for his benefit. Faircourt will give a short talk on Alström Syndrome. There will be live African-style drumming, belly dancing, food, and wine from a local vintner, besides a silent auction of select sculptures by Faircourt.
"He is a good person, a good potter, and we want to do all we can to help him get that kidney," said Shevon Sullivan, who owns the studio and is Faircourt's ceramics instructor. All of the proceeds and donations from the event will go directly toward a $50,000 fund to help Faircourt receive a kidney transplant. Requiring dialysis three times a week and with frequent hospitalizations, he is unable to support himself or study full time.
Though the original purpose of this event was solely to aid his health, Faircourt considers it an opportunity to help encourage research and support for others who are battling the disease. Alström Syndrome International is an organization that supports Faircourt's cause, conducts research on the disease, and hosts global conferences annually, one of which was held in San Luis Obispo in 1998 hosted by Faircourt and his family.
Anam-Cré Art Studio is located at 570 Higuera St. in San Luis Obispo. Donations in the form of checks should be made out to Alström Syndrome International with a notation that they are in support of Faircourt's dialysis. All donations at the event or online at alstrom.org are tax-deductible. For more information contact Shevon Sullivan at [phone redacted] or [email redacted].
Intern Marin Kautz contributed Strokes & Plugs this week. Submit your nonprofit and business information to [email redacted]
my brother david has an epic talent for snoring - he also has many life threatning challengesPASO ROBLES, CA3.6.12BY KJFdavid faircourt is my brother, my greatest teacher and my best friend. he is also a talented young man that intends to live to 100. as if life wasn't challenging enough, he was has given a failing heart, liver and kidneys. david is on the national waitlist for a new kidney, although i have seem him scrape so close to the edge of life that it sickens me to see him suffer without proper care. with the help of our friends, David Faircourt can keep snoring until he reaches 100.by the way, do you know what dialysis is?that's where they take all the blood out of your body to filter it and then return it to your body. when he was born, he was given an incredibly rare terminal genetic disorder called alstrom syndrome. www.alstrom.org in 2012, there are roughly 800 cases in 40 countries.
our mother describes the disease as a monster. my oldest brother died of the disease when he was only 29. his name was marty. alstrom syndrome makes children go blind. but that's not all. they also lose their hearing. suffer from kidney failure and an enlarged heart and other terrible things i have never had to consider for myself. so as you might imagine i live a life of incredible fortune and incredible misfortune. somedays i want to kill myself 1000 ways. but today i all i want to do is save dave.
david's nickname is dangerous dave. when david was young he could see a little bit and had lots of energy. he would run around the house and sometimes run into walls, tables and things. i witness him break a lot of lamps and sometimes even get seriously hurt. i always admired that about him and it may have inspired my early days of an amatuer stunt man. this one story in particular is famous in our family.
it was around easter when i snuck into our older cousins volkswagen bus to steal some candy. i was maybe 9 and david was maybe 5. like a ninja, he followed me, much like a ninja, because i was unaware. and minutes later we heard an enormous crash. it turns out david also snuck into the volkswagen after i had left and "accidently?" released the parking brake and put the the vehicle into neutral.david later admitted that it was deliberate, and he was attempting to drive. we lived on a hill and the vehicle began rolling backwards. fortunately, dangerous dave managed to leap out of the side door as the bus rolled backwards down the steep and bumpy driveway before it crashed into an oak tree. thankfully so, because beyond that tree was the roof of our neighbors house.
for the most part, dangerous dave has settled a bit, but he still lives up to his name. however, it's mostly due to the fact that what you and i consider to be everyday life, is still quite dangerous to dangerous dave. for example his immune system is very weak and a common cold that you and i could whip in a couple days or a week, can last for weeks and months for dangerous dave.
in 2008 he spent four days in the hospital for a cold that developed into a sinus infection. he was put on an iv unit for hydration and the doctor almost ordered a blood transfusion for low blood count. dangerous dave has had several blood transfusions over the past few years and many times we feared that we were going to lose him forever. pneumonia has brought him to the brink of death on more occasion than one. yet he bounces back as if called to some great purpose in life.
dangerous dave loves loud music. some of his favorite loud music might also be your favorite loud music. have you heard david's music? in 2009, he produced his first original song. it's called blindsided. i heard it one time and it made me cry.
david spends most of his day sleeping, listening to loud music and talking to friends on the telephone, he loves talking on the phone, give him a call right now. [phone redacted]. once in a while he gets out and goes to a good old fashioned rock n roll show. david's unique love for music makes him a most unique dancer. after teaching him just two basic principles, ive seen him light up many dance floors. "swing your hips and shake your fist" is all i really needed to teach him. you can imagine a few drinks were spilled, a few hats were knocked askew and a few dudes got jealous.
david also has a passion for good food with some pretty strong opinions as well. that's why i can really see him making a powerful food critic. "this chicken is delicious!" but that's not all, david loves animals. wouldnt it be appropriate that he have some pet sitting responsibilites? he can take a bath with a few dogs, and pet a few cats, couldn't he? wouldn't that make a pretty cool calendar?
but most of all, what i want for david is to have the happy family that he has always wanted. when our parents divorced, we were young, and there was controversy. we were shifted from mother to father a few times and it was most incredibly painful. dad was hard of hearing and to communicate with him, it was necessary to look at him directly and speak loud. this situation resulted in lots of yelling between the boys and him. i can remember some very itense moments where both parties had no idea what the other person was talking about."what?!""huh?""what are you talking about?""i don't know, what are you talking about!"
now, ive had a couple vegas style weddings, and a consistent flow of ill suited girlfriends. but as for david, he has had just one true love, her name was sara. they met through my mothers friend. sara lived on a ranch and loved horses. sara and david shared something really special as they were both suffering from insurmountable physical challenges. they talked on the phone a lot, but were not able to visit often because sara had a rare disease as well, and she was susceptible to infection. sara passed on in 2006 i think. david says he still thinks about her a lot. and i know it makes him very very sad. and he has told me that he feels that a big piece of him is missing. that makes me cry because that is pure and that is beautiful, and that is rare. i am crying right now. let's all shed a tear or two for this sad love story.
on the bright side, david is still snoring, and i hope he is dreaming of some pretty delicious chicken. and i also hope that the perfect someone will find david very soon.
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