2006 HPE Family Conference

Flackback Friday – April 2006

HPE Family Weekend and Conference

Indianapolis, Indiana, USA
April 21-23, 2006

Co-sponsored by Families for HoPE, Inc.
and
the Carter Centers at Kennedy Krieger Institute

The Highlights

The HPE Family Weekend & Conference, co-sponsored by Families for HoPE and the Carter Center at Kennedy Krieger Institute, was truly a weekend to remember! Friendships were created, lives were celebrated, and HoPE was abundant. Here’s a special report on a few of the highlights from the event.

Up, up and away . . .

On Friday evening, April 21, travelers on West 86th Street in Indianapolis were distracted by 130 helium balloons ascending toward the heavens, from the courtyard of the Marten House Hotel and Conference Center, in honor and memory of infants and children who had passed away due to complications of HPE. Their lives were remembered as family members and friends released a balloon tagged with their identifying information. To date, we know that Anysia’s balloon was found in Lima, Ohio and the string and tag of Harrison’s balloon were found near a pond outside of Buffalo, New York, where mysteriously, a frog was also discovered hopping about!

Welcome to Indy

For many of the 26 families in attendance, this was their first visit to Indianapolis, so it needed to be extra special. Inspired by children’s book Twelve More Little Race Cars by Scott and Judy Pruett, a racing theme was chosen for the kick-off dinner. The highlight of the evening was each family’s moment in the “HoPE Raceway Winner’s Circle”. Each of the children diagnosed with HPE is a winner, and at HoPE Raceway all winners were presented with a trophy declaring him/her a “Champion of HoPE” as they sat behind the wheel of a custom-designed race car (wheelchair accessible, of course) bearing the names and logos of all of the corporate sponsors of the event.

What would a victory speech be without thanking those who made the victory so sweet? Special thanks to Indianapolis Motor Speedway Corporation, Tony Stewart Foundation, Women’s Auxiliary of Motorsports, Hendrick Motorsports, Party Time Rental, and Build-A-Bear Workshop. Personal thanks to Joey Arnold, Myrian and Keith Wiggins, Judy and Scott Pruett, Cheryl Riley and especially to Debbie and Bruce Timmerman for realizing the vision and making the racecar a reality.

Gentlemen, start your engines!

A group of dads and grand-dads descended on the Indianapolis Motor Speedway for “Rookie Orientation” on Saturday morning. The excited wanna-be racers were shuttled to the track by driver Ron Clark aboard a bus provided by Traders Point Christian Church. Upon arrival, the rookies’ excitement reached a fever pitch as they were greeted by the sound of roaring engines from the Richard Petty Drivers’ Experience session in progress. With the adrenalin still flowing, the racers visited the IMS Hall of Fame Museum where they learned about the history of “The Greatest Spectacle in Racing”. Each rookie could only imagine how the legendary Ray Harroun, Dan Weldon, Jeff Gordon and Tony Stewart felt as they climed the fence, took the checkered flag, kissed the yard of bricks and took the ceremonial swig of milk! After all that stimulation, the racers made a pit stop at the museum gift shop to pick up a few souvenirs. Track officials confirmed that a good time was had by all!

Meanwhile, back at the hotel . . .

The moms and grandmothers spent the morning being creative with a scrapbooking activity led by volunteer Kayce Auman. The ladies also participated in a beaded bracelet project designed in “assembly line style” so that every bracelet created would have beads placed on it by the hands of each person in the room. These bracelets would serve as a symbol of HoPE and a constant reminder that “We’re all in this journey together!” Special thanks to Danielle Tooley for donating the beads and wire for this project.

While the moms were occupied with their projects, the children were having fun too. The girls ages 6 and up, participated in a flip-flop decorating activity led by volunteer Anne Lennon of Sally Huss Gallery. All of the girls were quite fashionable at the pool with their newly-decorated flip-flops! The boys ages 6 and up were a busy group as they participated in a scavenger hunt supervised by volunteers Phil Parelius and Rob, Jan, and Nick Meyers.

Other activities also included singing, dancing, playtime, story time and a craft project. In the afternoon, there was a visit from several service dogs affiliated with the nonprofit organization, Canine Companions; also, the siblings participated in SibShops, workshops intended to celebrate the siblings of disabled children, conducted by a group from Easter Seals Crossroads.

Taking a parade lap on a “Holiday” weekend!

The theme selected for Saturday night’s events was appropriately titled “Merry Happy Holidays”. Many of the families and children with HPE have celebrated at least one holiday within the confines of a hospital room. A few of them can no longer count their in-hospital holidays on just one hand. In appreciation of all holidays—past, present and future—each family celebrated the special days of every season all in one night, and no one had a passing thought of the hospital!

Each child presented in costume and participated in a colorful parade winding from their rooms to the hotel ballroom where the evening’s festivities commenced. It was quite a sight to behold as superheroes, princesses, firemen, clowns, and various other characters marched their way into the hearts of the observers along the parade route!

Inside the ballroom, the children collected treats and favors in bags they had decorated earlier, from each table pertaining to the various holidays.

After dinner, thanks to the in-kind donations of many individuals and corporations, no one left the ballroom empty-handed as the door prizes were generous and abundant. Of particular note were in-kind donations from Rifton Equipment (bath seat), AdaptiveMall.com (feeder seat), and Enabling Devices (adapted toys and switches). Several children were able to immediately benefit from the donation of these items which can often be very expensive and difficult to obtain through health insurance plans.

Parting is such sweet sorrow . . .

After a night of sleep, all of the families gathered one final time for breakfast on Sunday morning. It was a time for exchanging contact information, taking photos, and sharing hugs and handshakes to reinforce the new friendships made over the course of the weekend. Even though some felt weary on an early Sunday morning following a very busy weekend, there was a spirit and enthusiasm beginning to fill the air. Not only had the families connected with other families so similar to their own, they were discovering a renewed sense of HoPE.

One Comment on “2006 HPE Family Conference

  1. We were there! It was scary at first making new friends BUT quickly wonderful fun. I got to know THE Oprah Winfrey of HPE, Leslie Harley. I got to hang with Sammy, Ariana, Ali and many other angels that weekend. My dear Lula loved all the extra attention. I encourage all families and close friends to attend if given the opportunity. Make it happen people! You will always be glad that you went and grabbed life to its fullest.

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