Skyla’s Medical Expenses

September 18, 2023 is the date that we received news about my niece Skyla (she’s 15yrs old), that changed our families lives forever. That day my sister took her kids in for a normal dental visit, like they do every 6 months. During this appointment they did a routine pano scan and found a concerning spot on my niece, Skyla’s jaw. They were informed by the dentist that they needed to see an Oral Surgeon ASAP, that this could be a cyst or worst cancer. My sister took Skyla to her Orthodontist next, they confirmed that there is indeed a concerning spot. Dr. Napoli was phenomenal and made some calls to help get them into see an oral surgeon quickly.

They saw multiple surgeons who all agreed that a biopsy was needed before they continued with a surgical plan. The biopsy was sent to the lab and they were referred to UF Shands. The first result from the biopsy requested it be sent to John Hopkins for further review because they couldn’t rule out cancer.

After a long agonizing few weeks my niece was FINALLY approved to be seen by the doctors at UF and they able to get an appointment November 13th. Skyla had multiple CT scans and MRI’s to determine the severity of the aggressive growth in her jaw.

By the grace of God, John Hopkins reviewed the biopsy and confirmed it is NOT cancer. She was diagnosed with Inflammatory Myofibroblastic Tumor (IMT) of the jaw. This is a benign tumor, however, has been known to travel and spread throughout the body. Thankfully there are no other concerning spots in her body. We learned that this is a rare and aggressive tumor found primarily in adolescents and only 100 cases a year occur in the US.

We have a phenomenal team of consisting of multiple surgeons. She will have what they call a “jaw in a day”. This will be a 10-12hr surgery during this time they will remove the tumor in her jaw replaced with her Fibula and then a prosthetic placed in (there is a chance she’ll need a skin/tissue graft). She will have an incision across her neck as well as up her left leg. She will loose at least half of her lower jaw. After surgery Skyla will have a feeding tube and be in ICU for at least a week. She will receive intense therapy following consisting of physical, swallow, and speech therapy. My sister has been fighting the insurance company as they are denying almost all of her claims that have been submitted.

We also found out that they will NOT cover her prosthetic as they say teeth are not a necessity. We were hit with a current cost of approximately $26,000 and were told this price will most likely go up as we progress.

Right now my sister has taken a big step back on work due to the amount of appointments they have In Gainesville and Tampa.

We do not know how long this process will take and when she will be able to return to normal activities. Skyla has had to stop doing what she loves most due to the risk of fracturing her jaw and the amount of pain she is in. It’s heartbreaking watching her go through this.

The uncertainty kills us but we have faith that everything will go smoothly and will be ok. We’re asking for prayers for Skyla throughout her recovery and help from family, friends, and the community hoping we can all rally together to help offset the cost of this. Everything will be put towards Skyla’s Medical Expenses.

We appreciate all of the support and prayers. I will keep everyone posted throughout this journey.

Chelsea Pennington (Skyla’s Aunt)