Rylie Markay- Our Little LadyBug

Several people have suggested that we start a blog of Rylie’s NF Journey so here we go…

As some of you may already know when Rylie was about 2 months old she was referred to a specialist at Primary Children’s Hospital. After several months of anxiously waiting we were able to were able to meet with a team of geneticists and at 6 months old Rylie was officially diagnosed with Neurofibromatosis- Type 1 (NF-1). NF1 is a genetic disorder that causes tumors to grow along various types of nerves throughout the body. The last few months have been spent going to and from routine check-ups, meetings with teams of specialists, and a few appointments in between to help monitor Rylie’s health.

That brings us to now… On February 12, 2014 our lives were forever changed. After a routine eye exam with Rylie’s ophthalmologist we were told there was something of concern on Rylie’s left optic nerve. We were stunned. Although we have know for months this was always a possibility we were hopeful that Rylie would beat the odds and continue to thrive and grow with little to no concerns. While knowing this was a possibility nothing prepares you to hear someone say to you “We believe your daughter has a tumor growing on her optic nerve.” As we sat in the doctor’s office, tears streaming down our faces we began to listen to the doctor’s instructions on how to proceed. Our “routine” appointment suddenly was anything but routine! We were ushered into a few more diagnostic exams and scheduled for an MRI the following week. As the week went on we just hoped and prayed this was all just one big gigantic mistake!

On February 20, 2014 we headed back up to Primary Children’s Hospital for Rylie’s MRI. She was a trooper. Our little ladybug was poked, and poked, and poked some more. All of the while she continued to make us laugh and smile. After a long couple of hours at the hospital we were released and sent home so Rylie could sleep off the rest of the sedatives. It was one of the most restless nights we have ever experienced as parents. The following day we were given the news no parent ever wants to hear---- Rylie was diagnosed with an Optic Nerve Glioma, a tumor in her left optic nerve.

Rylie will beat this! We caught the tumor and her prognosis looks good. While she may have a long road ahead of her we are blessed and hopeful that a good outcome will come from a heart-breaking situation.

We have started this blog not for sympathy but in hopes that along with keeping our families and friends updated on Rylie’s journey that we will also be able to gather more support for families who too are battling to find a cure for NF. We have an amazing support system and we want other families to feel that same love and support. So many people have reached out to us and offered us help, support, and just a shoulder to cry on. We are so lucky- here in Utah we are surrounded with the best medical facilities and even better doctors. NF treatments are expensive and having these options so close to home is nothing short of a blessing. The Children’s Tumor Foundation is working hard to find a cure for NF through by fundraising for research; we are excited to join them in the fight. We hope that as you follow Rylie’s journey you will ne inspired to help to as well