WHERE HENNA'S SCOLIOSIS STORY BEGAN (Oct. 2018) : WE NEED YOUR HELP! Our sweet Henna Jae, 13, needs a life-saving spinal surgery NOW. We have no time to spare. Her scoliosis has worsened in under two months from 51 to 78 degrees (at 80-90 her spine will begin curving into her heart and lungs). There are only five surgeons in the world, including Istanbul and Spain, who can perform the surgery Henna's aggressive scoliosis case requires. There's one surgeon, his team located in New Jersey, who can help Henna, but our insurance doesn't cover out-of-state procedures. Hospitalization + five days in pediatric ICU + anesthesiologist + surgical fee = Our hands are tied. Henna needs this surgery within 1 - 3 months, max, and we can't believe this is happening.
PLEASE HELP! Every scoliosis warrior has a unique case. Scoliosis is a curving and twisting of the spine and only affects 3% of the population--but we aren't talking about a minor curve or even mild problems here. Due to the severity of Henna's scoliosis, she needs a surgery called ASC (Anterior Scoliosis Correction) and very quickly. It's not a spinal fusion or metal rod surgery; it's different, and it's what Henna specifically needs to go on living her best life.
S.O.S! (Save our Spine) With your help, we can get Henna the ASC surgery in New Jersey she desperately needs RIGHT NOW. She's dangerously close to severe complications and long-term consequences to her respiratory and cardiac health.
TO KNOW HENNA IS TO LOVE HER, and you'd know not only her love of sports (her Instagram bio long read "God first, sports second"), but also her tender heart, her bright smile, and how it feels when she gives you a hug. She's kind and gentle, and SHE NEEDS US TO HELP HER.
Once her spine is saved by this surgery, Henna will be out of danger and able to run, jump, play her beloved sports, and go on to do all the big things ahead of her, she's only 13 years old! We know there's a huge battle ahead, and Henna is prepared to fight with everything she's got. She's scared, we're all very scared, but not afraid. We all know deeply that with God and the love and support of all of us around her, she can do this. We don't have any time to spare. Henna needs this surgery very quickly.
We know this is a lot to ask of anyone and we're beyond humbled and grateful for your help.
EVERY GREAT STORY HAS A TWIST. That's what we all keep saying to support Henna through her scoliosis journey and to stay positive. Thank you from the bottom of our hearts for being part of Henna's healing story, and for your help. ~ Family & friends of Henna O'Deay.
As Henna's grandma, it's me and all of Henna's family and friends who are helping Henna. All donations will go directly to the cost of Henna's hospitalization and surgical fees via wiring payments. Henna's surgical date has been set for November 16, 2018. Many of you have kindly requested; alongside Go Fund Me, donations made payable to "Henna Scoliosis Fund" are greatly appreciated as well. Please contact a family member of Henna's for mailing address, or mail to: Holy Cross Lutheran Church, 600 Court St., Saginaw, MI, 48602. Again, any donations received will go directly to the cost of Henna's hospitalization and surgical fees. Thank you, deeply.
** UPDATE (January, 2019) **
By the grace of God and all of your help, Henna underwent ASC surgery on November 16, 2018. Her scoliosis curve is now under control and HER HEART AND LUNGS ARE OUT OF DANGER! She's doing very well as she continues to heal. WE THANK GOD AND ALL OF YOU DAILY IN OUR PRAYERS FOR YOUR HELP, LOVE, AND CONTINUED SUPPORT. This surgery is a Godsend, but no part of it has been "easy". Henna continues to fight her way back to her normal, active self. She's been through a lot at only 13 years old, but a warrior she must be. Henna's back at school and in physical therapy to help her achieve full healing. AGAIN, WE THANK YOU NOW & FOREVERMORE for your ongoing help in making possible her life-saving spinal surgery. She's got big dreams and a great life ahead of her, thanks to all of you.
OUR FAMILY CONTINUES TO WADE THROUGH THE DETAILS OF THIS DIFFICULT SITUATION: To-date, we're awaiting an upcoming STATE FAIR HEARING. Thus far, through getting a prior authorization, peer-to-peer review, and an internal appeal underway, we've received only three flat-out DENIALS OF ANY INSURANCE COVERAGE for Henna's out-of-state procedure. We've displayed above-and-beyond due diligence and we'll continue to follow all protocol in hopes that our insurance will recognize and provide coverage of the HOSPITALIZATION FEES we've incurred. With all of your help, we've been able to fund-raise nearly all of the surgical fees. IT'S THE HOSPITALIZATION FEES THAT REMAIN FINANCIALLY DEVASTATING.
If the hearing goes in our favor, we'll be able to cease fundraising. Praise God. IF not, we have no choice but to continue (and we'll look to host additional benefit events if needed). We're hopeful, but also realistic. We'll let you know as soon as we know. ALL CONTINUED DONATIONS ARE BEYOND APPRECIATED & WILL GO DIRECTLY TO "HENNA SCOLIOSIS FUND" FOR HOSPITALIZATION FEES WE'VE ABSORBED. Thank you, humbly.
Follow-up story on Henna by MLive (January, 2019)
**UPDATE June, 2019 **
Do you want the good news or the bad news? Breathe ...
The good first: Henna is doing beyond great, you guys! She just graduated 8th grade as Salutatorian of Holy Cross (even after missing 7+ weeks of school & battling through healing from major spinal surgery)! She’s playing first base and pitching as the softball star we know her and love her to be. Because of God and you all ...
The bad news: We've received word from our April 16, 2019 State Fair Hearing -- Denial.
Devastating? Frustrating? Maddening? All of it and then some, yes. Ultimately, it's a denial at the fourth level within our insurance company's policies. There is a fifth possible, circuit court, and we have every intention of trying. At that, it'll be a long journey to get there. We'll keep you posted.
Some light in this dark, though? Even knowing everything we now know, we wouldn't hesitate to do it all over again (although, obviously, we hope to never wade through anything like any of this ever again). While making a public outcry for help has been a humbling experience we'd prefer forget in some ways, it's also shown our whole family the beauty of our friends, family, and community coming together when needed. It's YOU who've helped and continue to walk with us, keeping us strong ...
And, by the graciousness of many, we've whittled the gargantuan number we owe down to something that, while not pretty and far from ideal, may be an amount that our family can absorb personally. We'll keep you posted on that as well as time continues to tell.
Truthfully? Every day that we see Henna romping through her life, healthy and pain-free, we're more sure that her outcome is worth what we may ultimately pay. We'll continue to fight a clean battle, one more round, and we're surely sharper with each attempt.
But, you guys, I'm not sure we'll ever call it defeat even if the insurance company won't comply. How can we be defeated if Henna is thriving?
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