NF Marathon Team Caring Run

Hello Teammates, 

The team is in its “busy season” with marathon events almost every weekend. The growth of our scheduled events, the funds being raised for research, and the number of new runner’s we are signing-up is both exciting and gratifying. Yet, we are kept ever mindful that we are racing for a reason: to fund a cure for NF. Here are two recent rather sobering updates that we would like to draw your attention to.

Diantha and Eddie Velasquez’ daughter Kayla is in University Hospital in Syracuse, NY due to a shunt malfunction and subsequent surgery to remove it.  She had emergency surgery Friday evening to remove all of the recently placed hardware for her shunt and a temporary (external) shunt was placed on the anterior of her skull. Treatment will continue until the infection goes away so they can redo the VP-shunt surgery again.

She is in for a "long haul."  She is "up and down"  . . . they have shaved most (over half) of her thick, beautiful hair and that will be her biggest "depression" once she realizes it.  I know to most that seems trivial but to a 20 year old young lady it's devastating!

And in California, long time NF Marathon Team member Nora Bruemmer wrote her friends and family to tell them that the last bone marrow transplant for her grandson Jake didn’t do what they had hoped for. “He's still a very sick little boy.  The doctors have told Sara and Gheorghe that there isn't anymore they can do for him so he'll be coming home on Friday. We will surround him with love and as much fun as possible.  He won't have any restrictions so he can go to a movie or Chucky Cheese, do most of the things he's always loved doing.  It's his time and we want to make it as joyful for him as we can.

This is going to be a time of celebration. There will be plenty of time for sadness later.  In this moment we have this beautiful little boy, to hold, to talk to, to LOVE.  He has touched everyone who has had the honor of knowing him and feeling his love and amazing spirit.  He's been a gift to us all and I feel so blessed to be his "Nana."  How lucky I am!”

These families will truly appreciate your thoughts and prayers, and perhaps during your next workouts, what we call a caring run, you would pause and reflect on these lives and the hope and courage they exemplify. It is our profound hope that when you join this team you never feel alone again . . . your “family” is waiting in love and support.

Bob Skold Jr. 
Dir. of Development, NF Marathon Team