Hey Sweet Shoppers! Today I want to tell you a little bit about something that is near and dear to my heart.
Neurofibromatosis (NF) is a genetic disorder that causes tumors to grow along various types of nerves. It can also affect other tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body. There are three types of Neurofibromatosis: NF1, NF2, and Schwannomatosis. NF1 occurs in one of every 3,000 children. One of those kids is my cute and amazing nephew, Jake.
Jake was diagnosed back in June of 2010 when he had a really scary seizure and a tumor was discovered on his optic nerve. Since then, my brother, Jim, and his wife, Andrea (and to a lesser degree, the rest of their families), have been learning about NF. In my opinion, one of the most difficult things about this disorder is the fact that it’s so unpredictable. There are many possible symptoms, and each of those symptoms can present themselves in varying degrees of severity over the course of a lifetime. And, you never really know what you’re going to get. Jake is lucky to have an amazing mom and dad who have advocated for him every step of the way, trying to ensure that his future is as bright as it possibly can be. They have pushed to enroll him in school and physical therapy programs to make sure he doesn’t fall behind. They have also become very involved with the local chapter of the Children’s Tumor Foundation (CTF), which is the nonprofit organization that funds NF research.
Last weekend, the CTF sponsored an NF Walk here in Salt Lake City, and my little family was so excited to go and help raise awareness and money for NF research. It was a fun morning. We were all part of Team Jakers. Since Jake is our hero, Andrea had made superhero capes for everyone who was part of the team, and we all wore them with pride as we participated in the morning’s events. There was food, face painting, wood working crafts for the kids, a raffle, a beautiful Cinderella who was taking pictures with all the kids, and the local Fire Department brought over a fire engine for the kids to climb all over. My kids had such a fun time seeing many of their cousins and participating in all the activities that were available. And, I loved being there to see all these brave kids who are dealing with a disorder that is not well-understood and can cause a lot of pain. These kids and their families have difficult roads to travel, but they do it with cheerful hearts and amazing energy. I just love being around them!
This is my favorite photo from the day. This is Jake with my dad and John, his favorite uncle.
Here are a few other photos from the morning and a layout that I did to remember the event.