Dear Friends and Family,
On February 2018, our son Frankie was diagnosed with Langerhans Cell Histiocytosis (LCH). A normal dermatologist appointment, for what we suspected was a "rash", turned into our worst nightmare. The appointment changed our lives as we knew it. Frankie, who didn’t look sick, act sick and from our perspective was a perfect four month old little boy, was diagnosed with one of the rarest types of cancers in the world. Langerhans Cell Histiocytosis was something we had never heard of. With additional research we found that many individuals diagnosed with the various forms of Histiocytosis are misunderstood and misdiagnosed by many in the medical field. We were shocked and shattered. As parents your goal is to do your best to protect your children from all types of dangers and especially illnesses. This was not in our plan.
So we did what any parents would do, damage control. We were faced with the task of preparing and planning for the unknown. We got to work and started to research. Within a week we found two of the best doctors in the county that were well known for their treatment plans for children with LCH, made appointments and started our journey. It was crazy and surreal, we went from our normal lives to traveling to the Children's Hospital of Philadelphia and then off to Texas visiting both doctors to garner as much information and help for our little boy.
Frankie is now 2 years old and has the best medical team behind him. His medical team has grown from two doctors to twelve. We are so grateful for all of them. He is presently fighting like a champ through chemotherapy treatments that are expected to quiet the histio sites in his body. He still doesn’t look sick or act sick and is always smiling. With positive thoughts and prayers we are fighting right along side of him. We will continue to fight for more answers and we will always be his number one advocates.
Overnight we became "those parents" that had to come to terms with our son’s diagnosis and fight for endless research and ultimately a CURE! Our lives have changed forever and we fight everyday for our son. I am humbly asking you to please come out on Sunday, September 27th, 2020 @ 8am to virtually walk the Histiocytosis 5k with us or donate to THE FIGHTING FRANKSTER TEAM. It is our goal to help increase awareness and raise money for more research. Not just for our Frankie, but for all the other families that are in the same position.
Thank you for joining me!