Childhood is often a time associated with carefree naiveté; a time when the horrors of the world are confined to overheard conversations. For some children, however, circumstances rob them of their innocence.
Such was the case for Colorado native Ellie White. Diagnosed at 7 years old with Wolfram syndrome, a terminal, rare genetic disorder, Ellie’s life changed forever. Strong, brave and wise beyond her years, Ellie never allows her condition to hinder life’s sweetness. Now 12 years old, Ellie has appeared on “America’s Got Talent,” as part of the second-place dance team, and even performed in the Broadway debut of “Elf: The Musical.”
This Friday, June 13th, a third annual benefit will be held at downtown’s Manna to support the last leg of post-production for “A Light in the Shadows,” a documentary by Jocelyn Leroux that chronicles Ellie’s journey. As well, owner and chef from Kinston, NC’s Chef and the Farmer, Vivian Howard—who also won the 2014 Peabody Award for her PBS show, “A Chef’s Life”—will be taking over the kitchen.
“I was quick to jump on and participate in this event, because as a mother you’ll do anything to make sure your kid is healthy,” Howard says. “I’m happy to be a small part in giving this family hope. I believe in the power of film, and I know how difficult it is to sometimes raise the dollars needed to bring a worthy project to completion.”
Diagnosed with juvenile diabetes at 3 years old, Ellie quickly had to adjust to a reality full of poking, prodding and concern for her diet. The situation worsened when her vision began deteriorating. Her mother, Beth White, a genetic engineer, began conducting research. By the time Ellie was 7, they realized she actually had Wolfram syndrome (WS). The disease causes diabetes, a decline in sight and hearing, as well as difficulties with bladder control, and eventually a loss of coordination. It ultimately takes hold of the brain stem, which controls the respiratory system, and results in death. Most children with the disorder have a life expectancy of 29 or 30 years.
A dancer since she could walk, Ellie has cultivated her talents as an escape from the disease. Though her mother found out about WS when she was 7, she didn’t disclose the information to Ellie until she was 9—right before her appearance on “America’s Got Talent.” Her mother didn’t divulge details in a grave sit-down conversation; rather, she brought it up in the car on the way to a dance lesson. Like everything in life, Ellie didn’t allow the information to break her.
“She was really remarkable,” Beth details. “I knew she was such an advocate that she would want to know and help spread the word.”
At the time of Ellie’s diagnosis, she was the only person in Colorado to have the disorder. Having requested donations to the Juvenile Diabetes Research Foundation instead of birthday presents since the age of 5, Ellie took her WS advocacy to new heights. She became the first person to ever mention WS on national television during her “America’s Got Talent” airing.
With the help of her mother, Ellie went on to found he Ellie White Foundation for Rare Genetic Disorders. Though apathetic about the use of her name in the foundation’s title, Ellie rallied behind the idea of the nonprofit aiding all people with genetic disorders.
“She was adamant that it wasn’t just about WS,” Beth says. “She said, ‘We’re going to find a cure for Wolfram syndrome and then I want to help other kids with other rare genetic disorders that feel lonely, abandoned and like nobody knows about their disorder.’”
Her efforts to raise awareness have led to several motivational appearances, from walking in fashion show put on by the Coloado Avalanche hockey team to acting as the keynote speaker at an event held at the Denver School of the Arts. Ellie’s innate spirit of love and compassion inspired her former dance instructor and former Wilmingtonian. When Leroux first started working with Ellie, she was actually unaware she suffered from the disorder. Her strength, maturity and dedication to dance hid her disease. When Leroux found out, she was so touched that she embarked on the making of “A Light in the Shadows,” which at times has left Leroux living out of her car.
“I looked inside myself to see what I could do to help,” Leroux tells. “What I have to offer is a means of outreach and artistic expression, through documentary film. It explores the human condition through a situation shared by four separate people and their families, along with the brilliant scientists currently racing the clock for a cure.”
This month marks the third year Leroux’s had the documentary in the works. Though filming’s complete, the project still needs to finish post-production. Capturing authenticity has been key. The filmmaker is moved by the intimate moments she has captured.
“I traveled with a crew of two, with the intention of keeping outside influence to a minimum,” Leroux elaborates. “We collected footage at a great excess, with the knowledge that the moments that truly tell the story are genuine and contained within the large body of work. During the editing process, I am seeing them extracted and combined in a way that materializes the powerful tale that has been unfolding in my mind since I began this journey.”
The film has raised $14,666 through three separate Indiegogo campaigns. As well, the film has garnered monetary support from The Ellie White Foundation and The Snow Foundation for Scientific Research. Both organizations will receive proceeds once the film is complete. Proprietor of Manna, Billy Mellon, jumped on board to help once Leroux showed him an initial video back in 2012. Within six weeks, he had set up the first fundraiser to aid Leroux and the Whites. The June 13th dinner will benefit Leroux’s film.
Yet, on July 10th, Mellon will hold another fundraiser, with proceeds benefitting Dr. Fumihiko Urano, a professor at the Washington University School of Medicine. Dr. Urano is looking to cure Wolfram syndrome. Mellon has worked with a slew of guest chefs for these dinners, including locals Keith Rhodes and Kyle McKnight, as well as newly minted James Beard Award winner Ashley Christensen of Raleigh’s Poole’s Diner. Christensen was slated to help out on July 10th, but she will be accepting the Beard award for chef in the southeast. So, Manna’s own kitchen staff will be cooking dinner.
Mellon’s efforts don’t stop at the yearly Wilmington events; he also travels to Colorado, each year, to help out with a dinner. As well, he’s met Urano, the leading scientist in WS research. “I always keep the perspective of being a father in all of my thoughts regarding children,” Mellon states. [I always attempt] to imagine what it would be like to have a sick child without a way of making him or her OK.”
The same sentiment is expressed by Beth. Though Ellie is sick, she rejoices the fact her career as a genetic engineer hasn’t left her completely helpless. On a trip to see President Obama’s inauguration in 2012, Ellie became sick and had to be rushed to the Children’s National Medical Center. Once there she quickly learned the doctors had never heard of WS and had no idea how to treat it.
“I can’t even imagine what other parents go through with their children,” Beth laments. “[Doctors] send you home and say, ‘we’re really sorry; your child has this terminal disorder and they’re gonna slowly die.’”
Bringing a face, name and story to this little-known disease epitomizes the philanthropists’ efforts. Ellie has meetings lined up with various politicians in DC, upon her return to the East Coast. She even has a trip to the White House planned. And, upon their return to Wilmington, the Whites hope Ellie will get the chance to take surf lessons at Indo Jax Surf School. Staying active and experiencing as much life as possible remains top priority for the family. Ellie’s recently been learning to rock climb and snowboard.
“We’re not going to be scared, and we’re not going to do anything differently other than just appreciate every moment we have together,” Beth proclaims.
Ellie White Fundraising Dinners
Manna • 123 Princess St.
Saturday, June 13th, 6 p.m.
Fundraising dinner with Vivian Howard, Chef and the Farmer
Saturday, July 10th, $125