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1 Spring 2021Spring 2021 HopeNotes MagazineHopeNotes Magazine The Maccoux Family read about their medical journey and the impact of your support Meet Orion’sMeet Orion’s brother Jamesonbrother Jameson a video call with spiderman brings happy tears2 Contents Volume 4, Issue 1 Spring 2021 Features 4 The Maccoux Family 6 Max Meets Spiderman 7 Week of Hope 8 Program Partners 9 Virtual Programming 10 Get Involved On the Cover A child’s most valuable support network is a strong family unit, but, sadly, all family members can be negatively impacted by a child’s illness. Siblings are often unintentionally overlooked as parents struggle to manage financial and medical concerns. Our events and activities are inclusive of the whole family to offer opportunities to bring them closer together when circumstances tend to pull them apart. Jameson, Orion’s brother, is a very active little guy and has a bit of a wild side, as most 3-year-olds do! He loves making people laugh, has a heart of gold, loves life, and is excellent at watching over his big brother and HopeKid, Orion. His family joined HopeKids in December 2011 and when they see sporting events or musicals on their calendar, they already know it will be a family favorite. They also loved the drive-thru event pictured on the cover! “HopeKids has been such a blessing to our family. Times have been so hard for many people, including our family. Not only have we been dealing with the craziness of the world over the past year, we have had multiple health scares and surgeries for our HopeKid. These events bring so much joy to us and allow our family to forget about the stressors of life. We can truly enjoy life to the fullest, even if for just an evening.” - Jen, Jameson and Orion’s mom 3 4 6 The Maccoux FamilyThe Maccoux Family shares their medical journey and the impact of your support Max Meets SpidermanMax Meets Spiderman see our virtual program in action Week of HopeWeek of Hope an incredible event leads to an exciting announcement Program PartnersProgram Partners creative events families have on their calendar 7 8For families who have a child with a life-threatening medical condition, the strains and stresses alter them personally, spiritually, emotionally, and financially, to name a few. And while there are supportive people along the way, the journey can be lonely---for the reason that it’s hard to understand the trenches until you’re actually in them. Our HopeKids families bravely face each day, because the battle is real and hard, and sometimes, like in the case of Olivia Maccoux and her family, it’s all they’ve ever known. The Maccoux family joined HopeKids in Spring 2009, and have attended over 150 events since! We asked Olivia’s mom, Cathy, to share their experience. meet the maccoux family meet the maccoux family55 Our medical journey started the day Olivia was born--way too early. Olivia started her life as a 29-week-old preemie with a typical hydrocephalus (buildup of fluid in the brain) diagnosis, which led to implanting a shunt system to drain the excess cerebrospinal fluid from her brain. We were told by the care team then that she should live a normal life going forward. Unfortunately, things took a turn for the worse pretty quickly when we realized she had an extremely complicated and rare type of hydrocephalus. It started out as slit ventricle syndrome, and as she got older, it transformed into negative pressure hydrocephalus. Because of this, she has endured over 140 brain surgeries and thousands of days in the hospital in her short 20 years of life so far. This is still an ongoing medical situation and will continue for the foreseeable future. From the moment that Olivia was diagnosed as a baby, it has been year after year of CT/MRI scans, hospital stays, brain surgeries and thousands of doctor visits. There have been no breaks from our medical situation. We also have another daughter, Traci, who is also a HopeKid. Traci was diagnosed with a life-threatening medical condition when she was 11 years old. Her situation is also a continual life of medical procedures and hospital stays. The medical situations we’ve experienced make our life an ongoing struggle. The biggest impact it has had on our life are the emotional and financial struggles. Since Olivia was born, we haven’t had any breaks and the bills never stop. We need to be a lot more careful with how we spend our money and we will be in medical debt for the rest of our lives. Having two children with rare and chronic conditions, we have had to travel a lot to see specialists, along with trying anything and everything to improve their situations, no matter what the price is. Olivia’s longest stay in the hospital was just over 160 days. In late 2020, Olivia had a hospital stay that was over 76 days and during that time she had three more surgeries. This is our life. Having HopeKids events on our calendar to look forward to means everything to our family! For Olivia specifically, it has been a lifesaver. Instead of only looking forward to painful procedures, she can look forward to something fun on an ongoing basis. Olivia’s sisters have had to struggle almost as much as Olivia. They have had to cancel many things in their lives, and were forced to quickly be more independent growing up. Because of this, having a sporting or concert event to look forward to through HopeKids was a complete blessing! Having a safe environment for Olivia to go to and be able to enjoy is huge! There have been a few times when Olivia was inpatient at the hospital and we were able to escape for the evening for a fun outing before going back inpatient. One event that comes to mind was being able to see Tim McGraw in concert in a private suite. At this time, Olivia was very frail and not feeling great, but once her doctors heard she had this opportunity, they felt confident that it would be a safe environment for her, and sent her on her way! It was a wonderful night for her and gave her strength to finish up her hospital stay. Due to our circumstances, our daughters would not have had some of the amazing experiences that HopeKids has provided. We have also met many wonderful families through HopeKids that we have become friends with. It is always comforting to meet and be around families in similar situations. It feels so good to talk to someone who actually “gets it”! We are forever thankful to HopeKids! HAVING HOPEKIDS EVENTS ON OUR CALENDAR TO LOOK FORWARD TO MEANS EVERYTHING TO OUR FAMILY! FOR OLIVIA SPECIFICALLY, IT HAS BEEN A LIFESAVER. “ ” meet the maccoux family meet the maccoux family66 Our virtual program began last year out of necessity, but it was quickly evident how essential it would become to HopeKids families. Many of them know what it’s like to self-isolate in order to keep their immunocompromised child safe. Your support provides hope for the future--and maybe even happy tears--for families who have a child with a life-threatening medical condition. Hope, even on Zoom, is a powerful medicine! MAX MEETS SPIDERMAN7 As a result of the profound impact that last year’s Week of Hope had on the lodge staff and HopeKids families, we are overjoyed to announce that it will become one of the many cherished annual traditions at Flathead Lake Lodge. We are excited about this new partnership between HopeKids and Flathead Lake Lodge, and know it will continue to bless and serve families for years to come. If you are interested in learning how you can provide families not only the trip of a lifetime, but, more importantly, the gift of hope and a community filled with love, support and belonging, please visit hopekids.org/weekofhope or contact Josh at josh@hopekids.org. R88 SPECIAL THANKS TO OUR VIRTUAL EVENT PARTNERS SPECIAL THANKS TO OUR PROGRAM PARTNERS Events were provided by 97 different program partners in December, January and February. These generous companies and organizations helped provide hope through an ongoing calendar of events. If you are interested in becoming a program partner, please contact your local chapter. Take a look at the December, January and February HopeDay and HopeCommunity Program Partners. Arizona Adaptive Force Performing Arts Allied Global Marketing Andrea’s Closet API, Inc. Arizona Coyotes Hockey Club Bikers for Christ of Arizona Chompies Cindy Joiner Photography Desert Mission United Methodist Church Family Restoration Community Church Fresh Taste Meal Prep Gloria Morgan Home Depot Jindo LLC JW Marriott Camelback Inn Scottsdale K2 Adventures Foundation Keelin Depas Lennon Equine Therapy Life Community Church Lowes Main Event Metro Auto Auction Notre Dame Preparatory High School Papa John’s Power and Exercise Fitness Center, LLC Spidey-Steve SportsPower The Walter Hive The Wolff Resident Experience Company Valley Youth Theatre Volunteer Debi Zierer Family Colorado Denver Museum of Nature & Science Let’s Roam Mici Handcrafted Italian Murphy Resort Murphy River Lodge Pikes Peak Line Dancers Red Rocks Church Saunders Construction Tiffany Maksimowicz Photography Trout Haven Fishing Pond Valor Christian High School Wagon Wheel Skate Center YMCA of the Rockies Kansas City Aldersgate UMC Blankie Tails Build A Cake Candy Coated Christmas Chicken N Pickle Chuy’s Mexican Food Domino’s Donutology Heritage Biologics Heroes for Hope Kaleidoscope Kansas City Zoo Kauffman Performing Arts Kriss Kringle Main Event Merlin Entertainment Kansas City Park University Powell Gardens Topgolf Middle tennessee Flour Power Brentwood Jingle Beat The Clausbornes Minnesota Dan Smith Fastbreak Foundation Insperity Matt Muhlbauer Minnesota Zoo Picnics With A Pup Power of 100 Rich Hirstein Ryan Muhlbauer Tara Gesy The Lumberjack The Warm Hearts Club Tradition Capital Bank Tradition Development Tradition Wealth Management Wellbeats north texas The Little Gym Topgolf Fort Worth Alyssa Erwin Cindy Neptune Cloth & Glaze Eden Bullock Good Shepherd Episcopal Church and School Let’s Roam Merlin’s Magic Wand Minis and Friends North Texas Texans Credit Union United Special Sportsman Alliance9 SPECIAL THANKS TO OUR VIRTUAL EVENT PARTNERS Virtual events were provided by 30 different program partners across chapters in December, January and February. These generous companies, organizations and friends of HopeKids share their time, talents and resources to ensure HopeKids families have something on their calendar to look forward to, even without leaving their homes. If you are interested in providing a virtual event, please contact your local chapter. Allied Global Marketing Amber Mackenzie Author Justin Ogden Brice Magic Colten Cowell Foundation Deanna & Sydney Mayer Debbie and Charlie Stroupe Fastbreak Foundation Field Trip Zoom Gilda’s Club Twin Cities Illustrator David Condry Jai Dee Jordan Burnidge Karl-Anthony Towns Katie Baptiste Kelsey Schmitz Leap of Faith Dance & Performing Arts Let’s Roam Microsoft Store Mike and Deb Bachman Mike Riddle Nasher Sculpture Center Northrop Occasions with Character Peyton Stuewe Playtime Tech Santa Visits USA Spidey-Steve Stages Theatre Company Terry Ricketts The Sowada Family Volunteer Myson Write On YogieFlow This has been the sweetest way of connecting. Loneliness, when you have to be extra careful during quarantine, is real. Virtual events give our son not just the opportunity to connect but also an extremely sweet opportunity to connect with people he never would have been able to meet. It reinstated that we are still very much a part of a community while we are carefully apart from people. - Jane, Pierson’s momNext >