A Call to Fight for Tyler

I have received calls from my friend to do all sorts of things over the 35+ years we have known each other. You know how it is. When your friends call, you are all in, no matter what.

One of the calls for years from Cristin has been to throw on some of the brightest colored panties you can find and run in the cold to raise money with thousands of others across the states to find a cure for Neurofibromatosis (NF) so that her son, and so many other children who suffer daily from this disease, can finally have hope for a cure!

A few days ago, I received a new kind of call. Not a call filled with laughter and the throwing around of crazy, fun, creative ideas to run in our panties for hope, but one filled with tears. Telling me that now is time, to fight the fight, we were hoping would never come.

We all have a child like Tyler in our life. A special child, one that always brightens your day when you see them. Especially when you know how hard he has fought, silently, for so many years to just be a normal child that goes to school and does all the normal things a child does.

Neurofibromatosis (NF) causes tumors to grow on nerves throughout the body and may lead to deafness, blindness, learning disabilities, disfigurement, disabling pain, and cancer. NF has caused Tyler to have developmental issues, mostly leading to intellectual disabilities. Tyler has dealt with tumors before, but unfortunately this time is different.

Recently, Tyler started experiencing severe pain radiating down his right leg. Everything he did became much more difficult, even eating. Last week Cristin took him to the hospital and after 3 days of many invasive tests the oncologist informed the family that this time the tumor is malignant and due to its location, removal and treatment need to be aggressive. Thankfully, a PET SCAN determined the tumor had not metastasized! Unfortunately, these masses will continue to be a part of Tyler’s life.

Tyler and his family are embarking on a new chapter in their life as they, with their doctors, determine the best course of action to save our Tyler! There is no more silently fighting. This is the call to all those who can help to fight for Tyler!

Tyler’s parents are currently out on medical leave so they can focus all their energy on him and his ongoing treatments while also raising their daughter. Medical bills and everyday living expenses will soon be overwhelming. They have an army of people who love them, we can each make a difference. Any help is greatly appreciated as the family faces their greatest challenge so far.