Families for HoPE, Inc.

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 86^th 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!

Dave Brown, Elizabeth's Dad

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, storytime 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.

The following individuals should be recognized for their personal contributions to the success of the HPE Family Weekend & Conference. They enthusiastically donated their time, talents and skills to work behind the scenes:

Joey and Shira Arnold, parents to Cayden

Barb Brown, mother to Elizabeth

Taunya Bryant, mother to Cameron

Ally Cohen, mother to Gabriel

Amy Colletti, mother to Abby

Libby Geryak, mother to Andrew

Steve and Leslie Harley, parents to Sammy

Summer Jesse, mother to Ryland

Karla Pettett, mother to Kara

Deb Roberts, grandmother to Derek

Brian and Traci Sarber, parents to Matthew

Dan and Heather Stauft, parents to Harrison

Brian and Roxanne Steele, parents to Rachel

In addition to several physicians who generously made monetary donations toward the weekend, there were a few physicians who were able to interact with the families during the course of the weekend.  Dr. Eric Levey of Kennedy Krieger Institute was kind enough to travel to Indy to participate in a very informative Q&A session for the families.  As a physician who has treated many children with HPE, he provided education and insight on various topics such as pituitary issues and puberty, parent interaction with physicians, transitional issues for parents of adolescents with HPE, and seizure disorders, just to name a few.  Dr. Andy Riggs, pediatric endocrinologist from St. Vincent Children’s Hospital, visited with several of the children and families on Saturday morning to answer any questions regarding endocrine issues, and Dr. Fernando Escobar, Director of Medical Genetics at St. Vincent Hospital, also made himself available to families wishing to consult with him on Friday afternoon.
Special thanks to the following healthcare providers for their encouragement and support of this event:
Ascension Health, Inc.
Timothy Brei, M.D.
Debra Bright, M.D.
Fernando Escobar, M.D.
Fishers Pediatric Dentistry
Eric Levey, M.D.
Barbara Matakevitch, D.O.
Carolyn Newbauer, M.D.
Andrew Riggs, M.D.
Randall Stoesz, M.D.
St. Vincent Children’s Hospital
Tendercare Home Health Services. Inc.
David Zipes, M.D.