As Far and Wide as the Universe Allows:

Jul 3 • EXTRA! EXTRA!, FEATURE, Feature, News, NEWS & VIEWS1 Comment

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A fund-raiser for 10-year-old Ellie White takes place Friday

Ellie White Fund-raiser
Friday, July 6th, 6 p.m.
128 South • 128 Front Street
Tickets: $100 • Limited to 125 people
Contact Manna: 910-763-5252 or elliewhitefoundationdinner@gmail.com

Seeing a happy, little girl flit around and dance like not a care in the world affects her may seem normal. The innocence of youth, the hope for a bright future: It’s all evident in Ellie White’s performance with The Silhouettes on “America’s Got Talent.” In September of 2011, Ellie and her team performed for Sharon White, Piers Morgan and Howie Mandel, placing fourth second in the competition. By the looks of it, one wouldn’t assume this precious child endures a life-threatening disease.

“I had no idea of her affliction,” Wilmingtonian Jocelyn Leroux says after meeting 10-year-old Ellie in 2011. Leroux served as assistant director of a private performing arts school in Colorado and taught the dancer. No signs were evident of Ellie’s struggles with Wolfram syndrome, a rare genetic disorder which affects the brain and central nervous system.

“She wears glasses and an insulin pump because diabetes is a side-effect of the syndrome,” Leroux notes. “But neither are unusual to see when working with large groups of children. Ellie is a bubbly, happy, charismatic and talented child. It was not until weeks later that I learned of her situation and grim prognosis.”

Diagnosed at 3, Ellie suffers from vision and hearing impairments because of Wolfram, which essentially is a mutation of the WFS1 gene. Ellie faces the challenges of the illness with courage in order to live a normal, healthy childhood. After meeting Ellie, Leroux was touched by her story and discussed it with a Wilmington friend who happened to watch “America’s Got Talent” weekly. Immediately, Leroux decided there must be a way to help the White family in their quest to fight Wolfram. A dancer and very much immersed in the film industry, Leroux decided a documentary should be made.

“I approached Ellie’s mother, Beth White, and asked her what she thought of the idea,” Leroux explains. “Beth and I had become close, kindred spirits of sorts during my time in Colorado. She was floored by the idea and explained how she would do anything to help her daughter. Early pre-production began immediately, and I have been pressing forward ever since.”

The Ellie White Foundation for Rare Genetic Disorders was founded afterward, under The Interleukin Foundation umbrella. “We needed an element of control on the donations to ensure they go toward research immediately,” Leroux says. Monies will fund the foundation, a lab and the documentary——which, in turn, will lead to a treatment and cure for Wolfram hopefully.

“Time is of the essence with Ellie’s case,” Leroux says. “The film will gain exposure for the foundation, and explain Ellie’s mission and purpose in an artistic manner that allows us to dig deep into the heart of the story. We intend to screen and distribute the film as far and wide as the universe will allow. In time and generations to come, donors and those involved with the foundation will be able to look back on the film, know Ellie as the sweet little girl that she is right now, and understand how her legacy began.”

Plans to launch a crowd-sourcing fund-raiser are in the works, too. However, this Friday, July 6th, Leroux has joined efforts with Manna proprietor Billy Mellon and local chefs for a fund-raising dinner and silent auction, featuring the star of the evening, Ellie White, as a guest-speaker. Mellon was more than happy to get onboard with the project.

“Nothing gets me more upset than stories about children with diseases,” he notes. “I know they haven’t done anything to deserve it, and most of the time it is just an unfortunate stroke of bad luck. Their lives are just starting and they are already struggling with ‘adult’ things.”

Mellon enlisted the help of Manna’s sous chef Kyle Lee McKnight and Catch and Phun Seafood Bar proprietor/chef Keith Rhodes to head the menus for the evening. They’ll be using ingredients from Eco-friendly (VA) and several local farmers. Mellon’s also securing wine packages, local gift cards and certificates for the auction.

“We like to support local/community events, charities and fund raisers,” Mellon says. “It feels good to give it to the right outlets and be a part of the community.”

Tickets to the fund-raiser are $100 with all proceeds benefitting the foundation. The event takes place at 128 South, which has donated the space. Susan Savia will organize musicians to play the after-party and, according to Mellon, “rumor has it the Freakers are helping with marketing the after-party. Jocelyn Leroux is working tirelessly on it, too.”

We continued to speak with Leroux about Ellie’s captivating story and the upcoming documentary she’s set to shoot in coming months. Here is how the conversation unfolded:

encore: Tell us a little about the film and where you are in its process.
Jocelyn Leroux: The film has a main message and several underlying stories. Although the subject matter is medical, I am adamant the project also be an entertaining work of art, much like Ellie and life itself. The main point is to draw focus, knowledge and support for Wolfram syndrome research. It, like other orphan diseases, is under-researched and under-funded, simply because so few people suffer from it. One underlying message is about creating a life well lived, and the purpose and importance of an individual existence. Another relates to raising a sick child, and provides an example of how to best help them through their experience. Another is the story of a mother’s love, and the lengths she is willing to go to allow her daughter to live out her dreams.

e: What do you plan on asking and expecting of Ellie in this film? Will you follow her daily through her life, interviewing her and family/friends?
JL: Ellie has been working by my side on this since the beginning. She has giant Post-It notes on her walls to jot ideas on, and I made a journal full of questions for her to help me translate her thoughts to the screen. The most important job I have in this project is to ensure that it stays true to her throughout, and that we never “assume” we know what she thinks or feels. I have been following her with a camera on occasion since the idea was born, and she loves it. Knowing that there are adults who believe in her and are working so hard to help her gives her complete hope that we will be successful in raising funds and finding a cure. After our Kickstarter funding campaign, we will go into full production in Colorado. At that time, a crew will be following Ellie and her family in their daily lives, and conducting interviews with loved ones and medical professionals.

e: The film will do what for the foundation?
JL: It is our hope that the film and the foundation will feed one another.

e: I see Ellie’s mom is a genetic engineer——any thoughts on that quite eerie connection between her job and her daughter’s unfortunate diagnosis?
JL: The fact that Beth is a genetic engineer is too coincidental! She and I have had numerous discussions about this exact subject. If Beth had been gifted with three perfectly healthy children, she may have fallen into happy complacency with her career, allowing herself to work part time or not at all during her decades of motherhood. Life had another plan for her talent. We are very aware of that and are ready to embrace it.

e: How is Wolfram currently affecting and/or impairing Ellie?
JL: Ellie currently suffers from severe juvenile diabetes, color blindness and bladder issues as a result of her disorder. She is also slowly going blind. After she loses her sight, she will lose her hearing, then voluntary muscle control, then involuntary.

e: Tell me about the foundation and lab you folks are hoping to build.
JL: The primary goal of the foundation is to facilitate research to cure Wolfram syndrome and other rare genetic disorders. At a meeting one evening, Beth and I were discussing exactly how we could translate all of these ideas into a cure for Ellie. It all sounds wonderful, but how did we really know our effort will be met in a timely manner by the very few labs interested in things like this around the world? We don’t want to just save someone in Ellie’s name 25 years from now. We want to save Ellie right now. Beth looked at me with tears in her eyes and told me of dreamy conversations with other geneticists, where they talked of taking blood and tissue samples from Ellie themselves, running tests that haven’t been run, compiling data that has never been compiled. I broke into tears and told her that was our answer and our new goal. We are putting together our own lab in Colorado now. With space and equipment donations there, plus the fundraiser money from the charity dinner and Kickstarter campaign, we hope to be up and running in a matter of months if not weeks after returning from Wilmington.

e: How did this weekend’s benefit come to be?
JL: Serendipity, just like every other aspect of this venture. The night I got back into Wilmington I was walking around downtown with promotional packets, and ran into my old and dear friend Billy Mellon. He shares the spontaneous quality that has made it possible for Beth and I to embark on this endeavor, and immediately became the perfect partner to ensure the success of an event such as this. He sent me to Mira and Christie, owners of 128 South, and they instantly agreed to donate their location. There has been such an outpouring of support from the community. I can’t explain how thankful I am.

e: How will it play out? What can attendants expect?
JL: The first hour is cocktails and a silent auction. We have wonderful items to bid on that were generously donated by local businesses and artists. Ellie, Beth, and I will all be in attendance. Next is a plated dinner, and during the dinner there will be a video presentation, and Ellie will be speaking live. Afterward, there will be a party outside on the deck from 8:30 p.m. to 11 p.m. with local live music. Party tickets are included with the dinner, or can be purchased separately for $5 at the door. Ellie will be present to meet and greet for the first hour of the deck party, and Beth and I will be available throughout.

e: Your hope/goal of the benefit…
JL: Our goal is to get as many people to come out as possible, and to donate whatever they are able. We aren’t putting a dollar amount on it, as fund-raising will be a permanent part of the foundation’s mission. We hope to raise as much as we can, simple as that.

e: If folks can’t attend, how else can they get involved?
JL: Our foundation paperwork is still pending, so we are currently operating under another research group, The Interleukin Foundation. All donations are tax deducdeductible a receipt will be provided. Checks can be made to The Interleukin Foundation with the words “Ellie White” in the memo line, and dropped at Manna. They can also be mailed to:

The Ellie White Foundation for Rare Genetic Disorders
11760 Lillis Dr.
Golden, CO 80403

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One Response to As Far and Wide as the Universe Allows:

  1. Irene Carlson says:

    When the Silhouettes placed second in Americas Got Talent, another serendipitous step in her lifelong journey became more obvious. When she was diagnosed at 3 with Juvenile Diabetes, she started raising money for JDRF. Now she is getting an even bigger microphone, thanks to people like Jocelyn. This terrible disease can be cured and this cure holds secrets of diabetes, Alzheimer’s, aging, and many other unintended consequences that will change the face of medicine. You are the hands helping lift her up. Thank you.
    Ellie’s Grandma
    Ellie’s Grandma

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