For the Children
Local families faced with heartbreaking health crises reach out for support, to demand change, and to protect other young lives
Friends of Autistic People Brita Darany von Regensburg and Tibor Darany, Vanessa’s parents
photography by kit noble
hair by becker chicaiza • makeup by lucas magnum from becker salon, greenwich
What would you do if your child was diagnosed with an inoperable cancer, a life-threatening condition or a lifelong disability? Would you retreat into a corner or would you come out swinging? These four local families had the tenacity to, as one mom put it,“make lemonade out of a lime.” With sharp elbows, grit and absolutely no experience as advocates, they strapped on their fighting gloves and championed causes for kids. Here are their inspiring stories.
Friends of Autistic People
When Brita Darany von Regensburg of Greenwich first started Friends of Autistic People (FAP) back in 1997, she knew that she had to do something for her autistic daughter, Vanessa, who was rapidly aging out of many programs. Once children with autism turn twenty-one, virtually all services are cut off. “I saw that there was a danger of our adult children with profound autism being forgotten, abused even, slipping into lives with nothing to look forward to,” she explains. “I knew that there was a need, but the depth of the need was not clear to me. I could have never imagined FAP to be as large and well-known as we have become.”
After “something unacceptable” happened to her daughter, Brita became a tiger mom. She says, “I got extremely angry and the anger inspired me to create FAP. I was able to channel the fury of a mother whose child had been hurt into something positive. I made lemonade out of lime.
“I did what, as a new American citizen, any American would do: take initiative and heal myself by doing it.” While raising awareness and fighting for Vanessa’s rights, she realized that neither the State nor the Fed was rushing to create mandates that would ensure a quality life and living solutions for autistic children as they were aging. Brita says, “We were not getting any younger, nor were all the other parents and children with autism around us.”
Although she had no prior experience dealing with advocacy or bureaucracy, Brita started rattling cages. She is now “surprised and delighted” at the outcome. She quips, “The initiative has grown to such an extent that files now cover almost every room in our house, which I, as a former decorator, had kept punctiliously organized.”
The case files in Brita’s home represent the many autistic adults she has helped to place in group homes and to receive age-appropriate services. In addition to being the go-to guru in Fairfield County for desperate parents with nowhere to turn, Brita is forging ahead with an initiative to create The Farm Living and Learning Academy Village, a sanctuary for adults with autism that will include academic, vocational and life-skills education.
Brita says, “We wanted to plan a farm, a small village academy, where these young adults could continue their education—based on nature, horticulture, animal care, etc. Why a farm? Our daughter and most children with autism love to hike for miles, ride and work with horses, work in a natural setting. And we were aware of a few other successful farms for adults with autism in Europe and the States.”
FAP is currently raising funds to bring Brita’s dream to fruition. Once completed, the organic farm will support twenty resident student farmers and twenty to thirty day-program participants. The farm will have residential homes, instructional and administrative buildings, a greenhouse complex, a barn and even farm stands. Students can get their hands dirty planting herbs, vegetables and flowers and learn farm-to-table food preparation. They will also groom and bond with condemned horses and other animals brought to the farm to live out their lives. All in all, the village will teach essential life and work skills and offer a true haven for grown
children with autism. autisticadults.com
The Mikey Czech Foundation
On January 6, 2008, Mikey Czech, a healthy, athletic Yankee fan from New Canaan was supposed to be celebrating his eleventh birthday. Instead, he was diagnosed with a rare brain tumor. Despite the devastating news, Mikey’s parents, Steve and Jennifer, didn’t curl into the fetal position. They launched a foundation to help cure pediatric brain tumors and to establish the world’s leading neuro-oncology lab.
How did they find the strength to go from facing the crisis with their own child to helping others via The Mikey Czech Foundation? Steve explains, “We are not the type of people who go through something like this and say, ‘Oh well! It was meant to be,’ and walk away. It’s simply not in our DNA. We firmly believe that Mikey’s ordeal happened for a reason. It’s God’s way of saying, ‘OK, Czechs, I gave you an array of blessings—family, friends, intellect, work ethic and a platform. Make a meaningful difference by employing those blessings to find a cure that doesn’t currently exist.’ We’ve always believed that what matters in life is not what you have. It’s what you do with what you have.”
True to form, Steve chronicled Mikey’s battle via e-mails to family and friends (a daily distribution list that grew from 600 people at diagnosis to 4,000 at the time of Mikey’s death), drawing strength from the humanity that came out of interactions with others. Steve says that reaching out was one of the smartest decisions he and his wife ever made.
“After the sleepless night in the wake of the initial diagnosis, we looked at each other and realized that we needed outside help and couldn’t deal with this ourselves,” Steve recalls. “We decided to send an e-mail to 600-plus friends, family and business associates that simply read, ‘Here’s where we’ve been; here’s where we are; and here’s where we need to go. Can you help us?’ Literally within minutes, 150 to 200 e-mails an hour flowed in for days, at one point shutting down our server.”
Although the Czechs had been a private family prior to Mikey’s diagnosis, “the ensuing outflow of assistance and support made the difference between surviving this ordeal or not,” says Steve. “One of the many, many ‘silver linings’ that emanated from Mikey’s ordeal was developing new friendships and deepening existing friendships within the community. We regularly refer to New Canaan as our ‘18,000-member family’.” Indeed, even kids rallied unconditionally in their support for Mikey—writing letters, sending cards, creating a massive banner and wearing “Stay Strong” wristbands. (The Czechs distributed over 20,000 “Stay Strong” bracelets to people around the world.)
In slightly over two years, The Mikey Czech Foundation (MCF) has raised in excess of $1 million toward its $6 million goal. MCF is currently working with Harvard Medical School/Dana Farber Cancer Institute and Columbia University Medical School to fund a clinical trial involving the biopsy of DIPG tumors (the type of tumor that Mikey had and which, up to this point, has never been biopsiable) and a molecular study to identify why certain areas of the brain are immune to tumor growth.
At home, the Czechs, including daughter, Sydney, now fifteen, “talk about Mikey every day,” Steve says. “We tell stories or re-live memories, and doing so has helped us to keep his memory alive.” mikeyczech.org
Program and CufCakes
Harrison Zuckerberg is a happy-go-lucky nine-year-old who enjoys running around the yard with friends, until he remembers that it’s time to check his glucose levels. If they drop too low, he could land in a diabetic coma. Diagnosed with type 1 diabetes (more serious than type 2 diabetes) at age three, Harrison is one of millions of kids who grapple with this chronic condition that can be life-threatening.
Says mom Courtnie, “At six years old Harrison asked, ‘If people don’t know that type 1 diabetes exists, then how will we find a cure?’ His statement and frustration were poignant. It was the genesis for the T-1 Enlightenment. The idea was to have people light T-1 luminaries and read a fact sheet on type 1 diabetes each year on November 5, his birthday.”
The family embarked on a media blitz that resulted in having T-1 luminaries lit in all fifty states and on six out of seven continents. Says Courtnie, “As a family, we distributed more than 38,000 T-1 luminaries. From there, more friends and families organized their own events from information obtained on Harrison’s website www.t-1luminary.org.”
A plucky third grader, Harrison is a pint-sized diplomat. He has met with past U.S. Presidents, Congressmen, Senators, celebrities and just about anyone who will support the cause. His appearance on NBC’s Today Show to promote the T-1 Enlightenment resulted in hundreds of e-mails from families all across the country wanting to participate in the first year. “Harrison’s goal this year is to meet President Obama and have the T-1 luminaries lit at the White House on November 5,” Courtnie says, casually. Don’t be surprised to catch Harrison hamming it up in the Oval Office on November 5, 2012.
Although Harrison provides the boyish charm, it’s his parents who bang the drums on his behalf. “There is a lot of work behind the scenes so he can have the innocence of a childhood,” Courtnie says. “One day, Harrison said, ‘Mom, I know a lot of people are working hard to find a cure for me.
I know there are a lot of kids who are in the hospitals who don’t have a lot of time. You can find a cure for them first. It’s okay, I can wait.’”
Type 1 Diabetes has taken away the innocence of childhood, a powerful motivator to find a cure. Courtnie runs through their grueling routine: “We test Harrison’s blood glucose/sugar levels every two hours night and day (he pricks his skin to get a drop of blood). He has an insulin pump that administers insulin (through a catheter) 24 hours a day, and for everything he eats. We change the catheter with needles every 48 to 72 hours.”
Recently, Harrison’s dad, Carl, joined the board of the Juvenile Diabetes Research Foundation and now runs its government-
relations program. His role is to educate Congressmen and secure government funding for type 1 diabetes, as well as advocate for expanded research projects on a national level.
Even with all the amazing support of friends and family, Courtnie laments that it is hard to ask people to attend galas, walks and golf tournaments year after year. “This provided the inspiration for CufCakes, a nonprofit that sells accessories. Why not start a company that sells products that people can use every day, and give 100 percent of the profits to research to cure life-altering childhood conditions?”
What started at the dining room table has grown into a large-scale operation that is now using the Internet and social media to reach a large, national audience.
For Courtnie, testing blood sugars around the clock provides many opportunities for late-night sewing and planning. She says, “Unfortunately, most of the CufCakes work takes place for a worrying mother between 11 p.m. and 2 a.m. Everyone told us you can’t have a company that gives away 100 percent of its profits. The trick is to be polite but never stop asking, and always try and figure out who knows whom to get the job done. As the saying goes, you’re never more than three people away from anyone.” t-1luminary.org; cufcakes.com
Mikey’s Way Foundation
Michael Friedman of Easton was a brilliant boy with big dreams. From first grade on, he never came home with less than A-plus. He was valedictorian of both middle school and high school, even though he had spent the better part of his high school career in the hospital or recovering at home from a rare form of cancer.
Through two surgeries, seven rounds of chemo, a stem-cell transplant, radiation therapy, and liver failure, Michael, diagnosed at fifteen, occupied himself by watching DVDs and playing handheld video games. During his nine-month remission, he was offered one wish through the Make-A-Wish Foundation. Instead of opting for a trip to Disney World like other kids, Michael decided to use his wish to start The Mikey’s Way Foundation to better the lives of pediatric cancer patients. His legacy is to help other kids alleviate the mental strain of treatment by distributing interactive and educational, Internet-ready electronics and improving the entertainment facilities of hospitals.
His dad, Les, says he wasn’t really surprised when Mikey told him what he wanted to do with his wish. “To know Mikey is to know how much he really cared about people. He had such a wonderful heart,” he says of his son.
Mikey’s mom, Barbara Landau, is happy that “Mikey was able to do everything a teenager should, like fall in love with his best friend, go to prom, graduate from high school, and even attend Harvard University.” She adds, “But perhaps Mikey’s biggest accomplishment was starting the Mikey’s Way Foundation.”
Though Mikey was discouraged by the thought of not getting better, Les says, “The Mikey’s Way Foundation literally gave him a new life to live. It was so important to him to leave something behind that would be ‘big.’ For me it was a no-brainer. Whatever he wanted was fine with me.” Using his wish from the Make-A-Wish Foundation, Mikey asked for a shopping spree where he bought thousands of dollars worth of electronics. He made his first distribution to Women and Children’s Hospital in Buffalo, New York, in December 2005.
Mikey lost his battle with cancer in October 2008. Les recalls that it wasn’t easy to pick up the mantle. “After the four-and-a half-year battle and then losing him, it took a really long time for me to pick myself up. But around November 2009, I finally realized that while Mikey had created this foundation to help him through the rest of his short life, he also did it to help me through my life without him. Of course, he was way smarter than me, so I honor his memory by continuing what was so important to him. Keeping this foundation going does two very significant things; it continues to help the thousands of children going through very serious life-threatening treatments and, in a way, it allows me to continue to take care of Mikey.”
Mikey wanted to be an oncologist and actually was working in the Harvard Medical School Lab at the time of his passing, trying to find clues, if not a cure, for his disease. Les recalls, “Mikey often said he was going to be a great pediatric oncologist and was inspired by his own doctor. He not only would understand the disease from a medical standpoint, but also from the emotional and physical side as well. Personally, I think the world lost a great potential healer when Mikey passed away.”
Today, Les is finding new ways to energize the Mikey’s Way Foundation. “There is so much room for growth,” he says. “The area of mind/body connection is only now starting to really gain momentum. People are beginning to understand that if a child can be stimulated mentally, if he can stay connected with family and friends, he can actually have measurably better reactions to his overall treatments. Also, as the Internet explodes, there continues to be so much opportunity to give these children the tools that will allow them to have face-to-face connection with their family, friends and classmates any time they want or need to. We are not a pill for the cure to cancer, we are the blanket for their comfort.” mikeysway.org