Haylee Faith Garay was 8 years old, two weeks shy of her 9th birthday, when she lost her long battle with Ehlers-Danlos syndrome. Haylee had five stomach surgeries and more. She spent the past 13 months in the hospital; each time she was ready to finally get sent home, she had a set-back and was back to square one. The doctors told me, she won’t make it, she’s way too fragile, and her gut is dead and can’t handle the pain and surgery. Haylee kept on proving everyone wrong, showing why she was the definition of a miracle. Eight months ago they told me to make funeral arrangements and even as we did, Haylee somehow some way was on her way back to making yet another recovery. Haylee never let her disorder and EDS stop her: she was just a youth joyful little girl who lived her life. She loved music, she loved Justin Bieber. She just wanted to show the world, “I got this, I’ll keep fighting,” and she did.
On July 11, 2020, at 1:04 am she ran out of gas and just got tired and lost her battle to EDS. As her father, it breaks my heart. I’m shattered but I’m very proud of her; she made me the father and man I am today and I’ll continue her story forever from here on out. I know Haylee took so many hits and always bounced back. Since birth she was very bossy little girl, and one thing I’ll always remember is that never listen to what all the doctors tell you, because Haylee was the strongest girl I knew; she proved that to me and everyone since she was a small baby.