Kaylee’s Journey
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Kaylee was diagnosed with osteochomdromatosis at 9 months old.
Osteochondromatosis is a genetic bone disease, causing bone tumors to grow throughout the body. As long as she grows, the tumors will grow. The more tumors that you develop, the more risk you run of them becoming malignant, resulting in chondrosarcoma. A condition that is resistant to chemo and radiation. The only treatment for this condition is to surgically cut them out.
If a malignant tumor appears on the spine or ribs, it has the potential to be fatal if not immediately removed, due to the risk of it spreading to the internal organs and brain. Kaylee had her first operation at 2 years old, removing tumors from her wrist and her ribs, and several more throughout the years. In 2016, the tumors became so big in her knees, they were wrapped around nerves and tendons limiting and restricting mobility. Further testing showed her bone density was that of an elderly person's with osteoporosis.The slightest fall, would result in a break or fracture. In 2018, Kaylee was hit by a car that ruptured one of the osteochondromas in her knee, that drs had been avoiding cutting out until she reached growth maturity, to prevent scraping her growth plates and stunting her growth. After the accident, they removed a small portion of it.
Pathology reports showed malignant cells at that time. Kaylee has been with out proper medical care while in the care of her father, up until now, since December of 2019. Since being in the care of her mother, Kaylee follows a large team of specialists and doctors. Right now she has several tumors growing on the under side of her ribs causing a partial collapse of her left lung. Vanderbilt has decided this has gotten too complicated for their area of expertise and she's been referred to Cincinnati Children's Hospital to have this removed by a surgeon that specializes in her condition. This is our only hope in saving Kaylee's life, as time is not on our side with the rate these are growing. Despite receiving several denials and filing multiple appeals with insurance, Kaylee and her mother made the trip to Cincinnati on November 18th, which resulted in Kaylee being seen in the er At Cincinnati Children’s due to worsening pain and struggling with every breath she took. Insurance had previously denied the request for the prior authorization made by Dr. Dasgupta, the surgeon, for a CT scan with dye contrast, that she needed to ultimately perform the surgery. Luckily the ER, was able to complete this request, making a step in the right direction to obtain this life saving procedure for Kaylee. 2 days later Kaylee arrived to the ER with the same chief complaint. At that time, she was admitted for pain control in hopes the surgeon would be able to perform the surgery while she was inpatient. After 2 more days of being inpatient on the oncology icu floor, Cincinatti children’s hospital DISCHARGED HER. Without the surgery, and adding even more pain relieving drugs to her already overflowing, back pack of medications. The mother informed the floor/discharging physician that discharging her child in the same condition with even more pain medication, violated his oath he took as a physician, to “DO NO HARM”. As it was more harmful to Kaylee to allow these tumors to continue growing in her chest crushing her organs. Not to mention the harm that long term opioid usage ultimately causes. That is when they both learned the reasoning for the discharge was DUE TO INSURANCE DENIALS FOR OUT OF STATE/OUT OF NETWORK. The physician also informed Kaylee and her mother that Cincinnati Hospital was not St Jude’s, and no one receives free medical care. After Kaylee’s discharge against the medical concerns of Kaylee’s NURSE, herself, and her mother, her mother contacted the hospital to set Kaylee up as a self pay patient, and secured an outpatient surgery consultation appointment with the surgeon, Dr Dasgupta. The following day, Kaylee’s mother received a phone call from the hospital to CANCEL Kaylee’s appointment, stating her mother needed to fill out a self pay affidavit AND PAYMENT HAD TO BE MADE UP FRONT PRIOR TO THE APPOINTMENT. The cost of the consultation was quoted at $600. The SURGERY that also had to be paid for in full in advance, was quoted to be $120k! Now we are out of options, and time is not on our side. Please see the attached medical documents from Cincinnati Children’s Hospital during her stay there. My hope is that through my daughter’s journey the Lord provides for us, it might raise more awareness about this horrible disease. You can view her full journey on her facebook page Look at this post on Facebook https://www.facebook.com/share/u9Tw4tD4w9PnF3N8/?mibextid=WiMSqg
'I just feel like my life was a curse': Thief steals girl's wheelchair
https://www.newschannel5.com/news/young-girl-with-rare-bone-disease-stays-encouraged?mibextid=Zxz2cZ
https://www.wvlt.tv/content/news/9-year-old-girl-pleads-for-thieves-to-return-wheelchair-488140211.html?mibextid=Zxz2cZ
https://www.wvlt.tv/content/news/Weeks-after-wheelchair-stolen-Kaylee-travels-to-Nashville-for-surgery-490142121.html?mibextid=Zxz2cZ#lnafio90aa8o2i3a3dg
I have added my PayPal and Venmo accounts if anyone chooses to donate directly. Thank you all for your time and prayers ❤️
Organizer and beneficiary
Samantha Gibson
Organizer
Seymour, TN
Cory Gibson
Beneficiary