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Kari's Heart Foundation 'is a life raft for families'

Julie Keeton • Feb 26, 2019 at 4:30 PM

Editor's note: February is American Heart Month. Few stories have captured our "hearts" like that of Weston Keeton. Born Sept. 3, 2006, Weston was diagnosed with several congenital heart defects and endured multiple surgeries during his first year of life. At age 4, he returned to Children's Hospital of Philadelphia (CHOP) to await transplant. After 2.5 years of waiting, Weston received his gift of life on Dec. 12, 2013, with a heart and double lung transplant. Though his then 7-year-old body fought hard to accept the new organs, Weston lost his battle on March 23, 2014. Weston's family shared his story openly - the good, the bad and the heartbreaking - and we followed their journey every step of the way because, despite his own struggles, this fierce and rambunctious little boy charmed his way into our hearts and reminded us that life is to be lived, celebrated and treasured every day. Weston's mother, Julie Keeton, remains a steadfast and vocal advocate for heart health and for families of children facing life-threatening illnesses. Today, she lends her voice once again to share their personal experiences with Kari's Heart Foundation - a faith-based organization set up to provide a wide range of personal, financial and social resources to families experiencing a healthcare crisis. This is Julie’s story.

Kari’s Heart Foundation is a life raft for families, who like us, were faced with unexpected costs from life-threatening childhood illness. Our world was turned upside down in June of 2011 after husband, Adam, and I had videoed our 4-year-old son, Weston, having what doctors had believed were seizures. We sent the recording to his doctors at Children’s Hospital of Philadelphia (CHOP) where they told us to bring him up right away.

As we had done many times, we prepared for a short stay where they would do some tests and probably do a cath. A few days quickly turned into almost 3 years of Weston living mostly at CHOP, 540 miles away from home. During the brief time he was able to leave the hospital, he had doctor appointments and therapy everyday. Kari’s Heart Foundation supported us every single step of the way.

Hospital life with a critically-ill child is a roller coaster. No one understood that better than Jennifer.

Jennifer Schoondyke is the co-president and Director of Outreach for Kari's Heart Foundation, which honors 7-month-old Kari Schoondyke who lost her battle with congenital heart disease on April 7, 2009.

During this time, Kari’s Heart Foundation helped sustain our family. Thankfully, Adam was able to go back to work to keep our health insurance; there were so many times that we were told “this could be it” and he would have to go without work or pay. Jennifer would send a box to Weston and our family every week. She would include special gifts for Weston or games for him to play with his siblings. She knew he loved jokes so she would send him an alligator to hide under his sheets or funny masks to scare his nurses. Beyond the toys were the notes of love and a gift card to help us with expenses. There were days that left us feeling so immensely beat down and empty and her cards of encouragement, love, hope and support lifted us up.

Jennifer’s daughter, Katie, would write to Weston and he loved getting letters from her. He would keep them in his pillowcase and he was always so excited to share them.

The love and kindness that Kari’s Heart Foundation gives is so genuine. Jennifer knew that my biggest fear was that Weston would die without Adam being in Philadelphia with us. She went above and beyond to assure me that if something happened, she would help get Adam to Philadelphia as quickly and safely as possible. There aren’t many people that you can cry to with brutal honesty.

It is easy to say, “oh you had health insurance.” We sure did but that didn’t pay for a caregiver to live in Philadelphia 24/7, for Adam to travel back and forth, or for the little things like Weston's beloved Hot Cheetos. When your child won’t eat anything else, you will do anything to get them to eat. Jennifer even sent him a Flaming Hot Cheeto shirt because she knew he loved them so much.

When Weston died, I felt like our whole world had crashed down. Everything that we had known before was a discombobulated mess. We were trying to put back together the pieces of our family - which had been spread across three states - finally living back under one roof again after losing a child. Without missing a beat, Jennifer brought us groceries, cleaning supplies, and even picked up the kids’ toys in our yard. All of this without asking.

Kari’s Heart Foundation adopted us as their family - just as they do with all of the other children they help. They surround the family and child with love and support, but especially with prayers - the best gift of all.

Donations to support Kari's Heart Foundation can be made online at https://karisheartfoundation.org/. Or you can mail checks to: Kari's Heart Foundation, P.O. Box 6165, Johnson City, TN 37604. To learn more, visit the website.

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