Support Kayley's Recovery from Rare Bone Disease

Hi, my name is Kayley!

I'm a 20-year-old full-time college student who also works full-time at Publix. I live by myself and support myself financially. I had a bad water slide accident which led to a fracture and the discovery of my bone tumor/disease called fibrous dysplasia. Currently trying to raise money for bills and also want to raise awareness about this extremely rare bone disease.

Here’s my full story (sorry it's so long):

On July 6th, my family was having a gathering because of the holiday. We ended up buying a water slide for this event. I didn’t want to go on the slide at all (my grandma had died the same day and I was upset). But my family encouraged me to go on, which led to my brother going down with me and landing on my head when we hit the bottom of the pool. I couldn’t breathe or lift my head up out of the water and had to be scooped out by my uncle.

I was rushed to the hospital where they took me back for a CAT scan. After getting the CAT scan, I waited in the waiting room for about 5 hours until the doctor came back with a blank look on his face and said, “Well, your C1 vertebrae bone is definitely fractured… and you have a tumor in that same bone… that I’ve never in my entire career seen before.” He then rushed me into an MRI to see if the tumor was compromising my blood vessels, but luckily it was not. The doctor went on to explain how it could be cancer and I needed to see a neurosurgeon within the next few days and so on. After about another 6 hours of testing and waiting, I was sent home with a neck brace.

After finally getting a referral to see my neurosurgeon, I met with him about 6 weeks later. He went on to explain that he also has only seen this situation not even a handful of times and personally has never performed this specific type of surgery in his entire career. He suggested that I get a needle biopsy first to determine if it’s even cancer or not. Then we can proceed from there with answers.

It took weeks to find a surgeon willing to perform this risky biopsy. No one wanted to touch it because it had to be led by a CT machine and they didn’t want to hit my main artery that runs beside the C1. They finally got someone to do the biopsy, which was traumatizing because I was under light sedation and felt everything at the very end. It took the biopsy a solid month to a month and a half to get back just for it to be inconclusive (meaning they have no idea what it is). After this devastating news, I went back to see my surgeon and he suggested doing another biopsy, but this time it would be open or to just go ahead with surgery. So we chose surgery.

I had to get an angiogram done before I had the surgery. I got the angiogram done on the 28th of October. If I was to pass the angiogram and they could successfully cut off the blood supply to my main left artery, my chances of living would be at 40% while death would be at 60%. Unfortunately, I ended up failing the angiogram. When they cut the supply off to my artery, the whole left side of my body went numb and I was going into a spinal stroke. This means they couldn’t cut the supply off and had to keep the artery intact for surgery. This brought my chance of survival to about 10% and my chance of death to 90%.

The next day, on the 29th, was my main surgery at 5:30 am. I was under for around 11 hours. My surgeon slowly removed the tumor one scrape at a time, taking a break in between scrapes to allow my body to stabilize. He tried his hardest to get most of the tumor out, but having the main artery still there made it impossible to get every little bit. After doing that, he began to fuse my skull, C1, and C2 together with a bone graft. He then attached a metal plate to the back of my skull and had two rods going from my skull to C2. There were also multiple screws put in. No one expected my surgery to go so well. My parents and all the doctors were 100% expecting me to pass away. I had multiple nurses and doctors coming to me during my stay in the hospital telling me how lucky I was to be here.

I didn’t gain consciousness or wasn’t fully aware of what was going on until around day 3 after being in the hospital. But before I did, my parents filled me in on what happened. I woke up not being able to swallow or eat. I couldn’t open my mouth. And I couldn’t speak properly. They told me they would try to give me meds and it would not go down at all. When trying to give me fluids to help it go down, all that fluid went into my lungs, which caused me to start aspirating really bad. No doctor could explain why I was having these complications. They said they’ve never seen anyone have these after surgery before. After I gained consciousness, I was placed on a feeding tube. This was the most traumatic experience I have ever had. Since my throat was so swollen, the tube would not go down properly. I started to vomit up blood and cry and scream in pain. They eventually got it down and everything was fine. The tube was awful. It caused more damage than anything.

I was released after being in the hospital for around a week. Still not able to eat, speak, or open my mouth. Still dealing with these complications to this day and have to see numerous specialists and therapists about it.

We finally were told that it wasn’t cancerous and that I, in fact, had an extremely rare bone disease. This disease is called fibrous dysplasia. It is a genetic mutation that happens in the womb. It is not hereditary and is a freak thing that just happens. It causes tumor-like lesions in bones, bone weakness, fractures, bone deformity, scoliosis, etc. So for the rest of my life, I am super susceptible to getting more tumors and fractures. My surgeon said it isn’t recommended to take the lesions out, but in my case, if he didn’t, I would’ve ended up paralyzed from my head collapsing later on in life. There are currently under 30 cases for my specific type of fibrous dysplasia.

This whole entire process has been traumatizing, depressing, frustrating, painful, and overall overwhelming. I was in a neck brace for 6 months. Out of work for 6 months. I’m now disabled for the rest of my life. No longer have full function of my neck. It was extremely difficult to process this entire experience and how my life would change in the long run.

I am incredibly grateful to God for protecting me and allowing me to have a second chance in life. Without Him and without all the prayers and support, I 100% would not have made it. Now I’m just here trying to raise awareness and money to help with hospital bills. Anything is truly appreciated and I thank every single one of you for all the overwhelming support. Healing one day at a time.

Love, Kayley.