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1 Summer 2022Summer 2022 HopeNotes MagazineHopeNotes Magazine Meet HopeKidMeet HopeKid JoshuaJoshua 2021 review: your impact by the numbers Horses, Hollywood, Hot Rods & Hope anecdotes from one family’s account of acceptance, community and hope for the future.2 Contents Volume 5, Issue 2 Summer 2022 Features 4 Horses, Hollywood & Hope 6 2021 in Review 8 Program Partners 9 Virtual Program 10 Get Involved 11 Connect With Us On the Cover Joshua is a funny, courageous and caring 13-year-old. He bravely battles a range of life-threatening medical issues, including cerebral palsy and others involving his nerves, body temperature regulation and heart, to name a few. He loves sports of any kind and plays on the Mission Special Edition hockey team, as well as participates in the CCV Exceptional Stars sports program. Joshua is a big fan of English Bulldogs and hopes to have his own someday. His family joined HopeKids in August 2014 and has attended over 85 events since. Joshua’s family’s favorite event is the HopeWalk because they love being able to raise money and give back to the HopeKids community, while having fun at the same time. They also enjoy attending Flying E Ranch each year. Both of these large events allow them to catch up with their friends and participate in their favorite activities. “HopeKids has given my family a chance to do things that we would have never been able to do otherwise. Joshua is proud to be a HopeKid. When someone asks him about HopeKids, he tells them it’s because he spends lots of time at doctors and the hospital. HopeKids helps balance the difficult stuff with amazing opportunities to look forward to. We have also met some wonderful friends that understand the difficulties we all face. During the good times and the bad, HopeKids is a huge blessing to our family by supporting us during each step of the journey.” - Kim, Joshua’s mom3 4 Horses, Hollywood & HopeHorses, Hollywood & Hope anecdotes from one family’s account of acceptance, community and hope for the future. 7 2021 in Review2021 in Review your impact by the numbers Program PartnersProgram Partners creative events families have on their calendar 8Horses, Hollywood, Hot Rods & Hope Author: Deb Bach man , Hop eK ids mo m anecdotes from one family’s account of acceptance, community and hope for the future.55 Horses, Hollywood, Hot Rods & Hope Horses Markus and Noah could hardly contain their excitement as we pulled up to the gate. “Mom,” gasped my son Markus in his raspy voice, “Look at all the horses! So beautiful. I cannot believe we are here!” Deep down, I could not believe it either. We were new to HopeKids, an organization that offers on-going events for kids facing life- threatening health conditions. Markus, our HopeKid, was beyond ecstatic to attend an outdoor event. Today, he would experience the rare opportunity to ride a horse. My kids had not spent time around other families facing similar challenges to our own outside of a hospital. At this moment, all they saw was an afternoon of guaranteed adventure and fun. And oh, it was spectacular. “Hi Mom! Look at us!” Noah announced and waved. Holding the rounded knob in front of the saddle, they smiled and chatted with the cowboys they viewed as celebrities. After each HopeKid and sibling had taken their turn, a noisy tractor pulling a wagon of hay came to a halt next to the corral. Noah and Markus jumped in line for their first ever hayride. A girl with glasses sat down next to Markus. Looking at him, she matter-of- factly asked my son, “So, what are you sick with?” Markus smiled as they started to freely talk about the health conditions that had brought them to HopeKids. “I have a port, too!” she exclaimed. “I need it for chemotherapy.” “Mine is for medicines when I am sick and sometimes for calories,” Markus shared. “What’s this?” she asked, pointing to a looping tube under Markus’ shirt. “This is my feeding tube. It’s how I eat,” he explained. He showed her the pump resting inside his backpack. I quietly listened, watching from the other side of the wagon. I had not completely understood what this whole HopeKids thing was until I heard two young tweens talk about things that would terrify most adults. Here, they found someone who understood what it meant to frequently be in a hospital; to be so unsure of the future. “Maybe we will see you at another event,” they told each other as they exited the hayride. The girl’s mom smiled at me. We did not need words. HopeKids believes hope is a powerful medicine. We see it in our family. Looking forward to something helps Markus believe there will be a next good thing, even as he, and we, face what at times seems impossible. HopeKids walks with us and does something truly amazing, they focus on the whole family. Hollywood “Nanny McPhee Returns” was our debut HopeKids private movie screening. We had stopped going to crowded theaters as it was not a safe environment for Markus. This event was different; I did not hear any hacking coughs, and trust me, I was listening. Excited wiggles were everywhere. Instead of two hours of medical appointments, this would be two hours of fun. We had been looking forward to this for weeks. Markus had done his best to stay well enough to attend and here we were, piling into a row of seats with a huge movie screen in sight. “Mom, look. We are not the only family,” my teenage daughter said as her eyes took in the crowd. For the first time, this healthy sibling was seeing a place, a community outside of the hospital, where differences are the norm. Kids in wheelchairs; using walkers; many without hair; some using feeding tubes, surrounded us. Each family near us walking a different path yet sharing many similar experiences. My daughter noticed the other siblings who, like her, sacrifice so much as their brother or sister face life-threatening issues. As a continued on page 666 family, we do so much for Markus. Here was a chance for a burdened older sister to share an experience with others who live with the fear of losing their sibling. “Hold it. There are kids, right in this theater, who live this way, too,” she said in an awestruck tone. I nodded and listened. A feeding pump alarm shrieked. My daughter and I jumped in response to the familiar loud beeps. Only this time, it was not Markus’ pump that was alarming, but a piece of medical equipment that belonged to another child. “This is,” she paused, “mind-blowing.” Something inside my daughter softened that day. Some may say it was the valuable lessons taught by the magical Nanny McPhee, which could be true. However, I believe I witnessed something even more powerful--the moment my daughter no longer felt alone. Hot Rods Markus was obsessed with monster trucks as a little guy. His automotive passion grew to include anything with wheels and a steering wheel. We climbed the metal bleachers to find a less crowded spot with a better view of the dirt track below. From my cold, hard seat, I noticed a child being wheeled to the racetrack in a hospital bed. It was obvious the young person was not doing well, but here they were, enjoying fast cars and monster trucks. My son was doing the same. “This is amazing, Mom!” my Markus said with a smile. My heart hurt for the other HopeKid family. Always aware of how quickly life can change, we were both doing what we could to help our children live this day despite their medical issues. A raspy laugh at my side brought me back to the moment. Thanks to a large, green monster truck that went air-borne and bounced randomly as it landed, my son’s crazy intense glee is forever locked into my memory. Hope Everything changes when a child has a life-threatening condition. Hospitals, needle pokes, IV medications, tubes--these things take over. Fear, exhaustion, financial hardships, strained relationships, educational challenges; the intense heaviness of knowing your precious child may die young. HopeKids encourages their families to focus on today and the future as they walk through the hardest times of their lives. Anticipation of something good is a mighty motivator. HopeKids serves their communities in a powerful way: one child, one family, one event at a time. Their festivities are not fancy--a tractor ride, a movie, a racetrack, a virtual book club. Meaningful connections are made in the smallest, unexpected places. Supportive relationships form as families step away, spend time together and celebrate a moment. Each memory a treasured gift. 7 2021HopeKids provides ongoing events, activities and a powerful, unique support community for families who have a child with cancer or some other life-threatening medical condition. We surround these remarkable children and their families with the message that hope is a powerful medicine. www.hopekids.org our ongoing calendar of events ensures there is always something on the calendar for families to look forward to 93% of HopeKids families agree or strongly agree that “being a part of HopeKids has increased the amount of time my whole family spends together.” Arizona | Colorado | Kansas City | Middle Tennessee Minnesota | North Texas Map created by Artmonkey - Freepik.com VOLUNTEERS R “It’s really hard to fully explain what HopeKids has done for our family. We were broken and hopeless early on and our family struggled finding anything to do as a unit. Being a part of HopeKids gave our family ‘family time’ again.” - Rachel, Miles’ mom 50,371 5,492 families served 302 new families enrolled in 2021 HopeDay, Virtual and HopeCommunity Events attendees across all HopeDay, Virtual and HopeCommunity events in 2021 2,443 donated more than 5,461 hours across all HopeDay, Virtual, HopeCommunity and fundraising events. NatioNalYear iN review888 SPECIAL THANKS TO OUR PROGRAM PARTNERS 708 events were provided by 215 different program partners in March, April and May. These generous people, companies and organizations help provide hope through an ongoing calendar of events. If you’re interested in becoming a program partner, please contact your local chapter. Take a look at the March, April and May HopeDay, HopeCommunity and Virtual Program Partners. Arizona ACAA Secondary Actor’s Youth Theatre Allied Global Marketing Alta Climbing Aqua-Tots Swim School Arizona Coyotes Arizona Diamondbacks AZ Pain Doctors Ballet Arizona Ballet Etudes Butterfly Wonderland Children’s Museum of Phoenix Christian Youth Theatre Colten Cowell Foundation East Valley Children’s Theatre Fiesta Bowl Flying E Ranch Galaxy Theatres Game Day Memories General Mills Ice Den Scottsdale Jai Dee JW Marriott Camelback Inn JW Marriott Desert Ridge K2 Adventures Foundation Lennon Equine Life’s Big Adventures Loren Perez Main Event Majestic Theaters Maricopa County Fair Merlin’s Magic Wand Foundation Mesa Community College Theatre and Film Arts Michelle Lucero Musical Theatre of Anthem Nasher Sculpture Center Papa John’s Parent Led Academy Phoenix Rising Phoenix Suns Charities Renaissance Phoenix Downtown Hotel Royally Fun Parties Sarah Dorcey Snooze Mattress Steve’s Dream Tabitha and Mark Theony The Encore Agency The Studio Academy of Beauty Tucson Speedway Uplifting Athletes Colorado ACT Colorado Castle View High School Celtic Steps CH9 Racing Colorado Adventure Point Colorado Home Realty Colorado Rockies Colton Cowell Foundation Cottrell Printing Denver Museum of Nature & Science Discovery Christian Church DS Environmental Consulting Game Day Memories Halcyon Hotel Jai Dee Kroenke Sports & Entertainment Let’s Roam Light Speaks Loudest Mrachek Middle School National Western Stock Show Red Rocks Church Saunders Construction Slice 420 The Marriage & Family Clinic Thorn Productions Kansas City Aldersgate Life Church American Theatre Guild Arvest Bank Theatre at The Midland Breakout KC Chicken N Pickle Chuy’s Mexican Food Colton Cowell Foundation Dave & Buster’s Donutology Folly Theater Independence Community Ice Jai Dee Kansas City Ballet Kansas City Current Kansas City Northern Railroad Kansas City Royals Kansas City Zoo Kauffman Center for the Performing Arts Level Up Gaming Main Event Mavericks McCarthy Building Companies Merlin Entertainment Kansas City Midwest Trust Center Planet Comicon Kansas City RoKC Sporting Kansas City Starlight Theatre The Coterie Tiger Rock Martial Arts of Overland Park Topgolf9 Wonderscope Children’s Museum of Kansas City Middle tennessee Adventure Science Center Altitude Trampoline Park Cheekwood Colten Cowell Foundation Country Music Hall of Fame Deer Run Camps and Retreats Donut Distillery Game Terminal Gilda’s Club Nashville Harlem Globetrotters Jurassic Quest Memphis Grizzlies MOVE Inclusive Dance Nashville Predators Foundation Nashville Repertory Theatre Nashville Sounds Nashville Zoo National Wrestling Alliance Party Belles of Nashville Relentless Nashville Rockefeller Productions Tennessee Performing Arts Center The Crag Indoor Rock Climbing Third Coast Clay Topgolf United Special Sportsman Alliance Vanderbilt Athletics Versus Men’s Conference WayFM Minnesota A Sister Collaborative Allianz Life Amanda Moe Beads of Courage Berean Baptist Church Chad Schumacher Circus Juventas Colten Cowell Foundation Cory Huberty Dick Sonnen Ecolab Elko Speedway Emagine Lakeville Emagine Rogers Emagine White Bear Fastbreak Foundation Game Day Memories Gilda’s Club Twin Cities Grace Church Insperity Jai Dee KTIS Lois Palmer Manty & Associates, P.A. Mathew Dumba Mats Zuccarello Merlin’s Magic Wand Foundation MiniSota Play Cafe Minnesota Timberwolves & Lynx Minnesota Twins Community Fund Minnesota Wild Minnesota Zoo Northrop Rapha Farms Ryan Sailer St. Croix Ballet St. Paul Osman Shrine Circus Stages Theatre Company Tickets for Kids Wellbeats north texas AT&T Performing Arts Center Beads of Courage Broadway Dallas Buff City Soap Calvary Church Central High School Colton Cowell Foundation Cotton Patch Cafe Dallas Center for Photography Dallas Children’s Theater Dallas Legion Dallas Mavericks Foundation Dallas Stars Foundation, Inc. Destynie Paige Photography Good Shepherd Episcopal Church and School Helping on Horseback Journey of Hope Let’s Roam Life Stage Theatre Main Event Merlin’s Magic Wand Foundation Misa Imports, Inc. Nasher Sculpture Center RISE Adventures, Inc. Royally Fun Parties Season Gourmet Goods ShangriLlama Sweet and Sassy Switchlife Team Cocktail Texans Credit Union Texas Rangers The Bookworm Box Topgolf Venture Church Our growing virtual program has proven impactful for home and hospital bound HopeKids families. You can become a virtual program volunteer or one of our virtual program partners by connecting with our National Program Administrator. nicole.headding@hopekids.org or 612.463.4919 Virtual Program get involvedNext >