Team Emmersyn: Wyoming Neurofibromatosis (NF) Walk is June 25

By Kristy Bleizeffer Jun 13, 2016

Emmersyn Adsit was diagnosed with neurofibromatosis when she was 17-months-old after her mother, a physician's assistant, found a lump near her spine.

It started with a lump on her daughter’s back. Emmersyn Adsit was 17-months old at the time, a princess to her two older brothers and her parents, Austin and Sarah Adsit of Casper. 

After a trip to Colorado Children’s Hospital in Denver, a series of tests including MRIs and ultrasounds, doctors delivered the diagnosis: Type 1 neurofibromatosis (NF), a genetic disorder that causes tumors to form along the nervous system, anywhere in the body.

Sarah Adsit is a certified physician’s assistant at Wyoming Nephrology. Since her daughter’s diagnosis, Sarah is learning what it means to be the patient (or at least the patient’s mother.) She learned that NF is more common than you might think, affecting 1 in 3,000 people – more than Huntington’s Disease, cystic fibrosis, and Duchenne muscular dystrophy combined. She and her family have also become advocates for NF research.

Last year, the Adsits organized Wyoming's first NF Walk. Money raised went to the Children’s Tumor Foundation whose mission it is to end NF through research.

Now they are organizing the second NF Walk, scheduled for June 25. They want to raise $10,000 and are planning an event with real life superheroes, face painting, a balloon artist, food, music, a raffle and more. 

You can register by clicking here. 

“There’s no cure for NF. There’s no real treatment outside of surgery,” Sarah said. “So this is one thing we can do: Try to further the research.”

Just before Emmersyn’s second birthday, her parents noticed that she wasn’t running like a toddler should. She’d fall a lot and complained of pain in her leg. She had more MRIs and doctors found another tumor in her right leg along her sciatic nerve. 

NF tumors are benign, but have about a 10 percent chance of becoming malignant in a patient’s lifetime. That puts Emmersyn at an increased risk of developing cancers such as leukemia and breast cancer.

Emmersyn, 4, is still the family princess. But, when she’s on the sidelines of her brothers’ football, soccer and baseball games, it is Emmersyn who cheers the loudest.

Many people with NF have good prognoses, Sarah said. But there are no FDA-approved treatments for Emmersyn’s type of tumors and certainly no cure.

Advocating for both awareness and research money is the way the family can feel like they’re in the fight, cheering for the little princess who cheers so loudly for them.