THIS IS WHERE OUR STORY BEGINS....
Amy's (co-owner and stylist) Nephew, Silas, age 9 was diagnosed with NF Type 1 at two months old... he has touched the hearts of many and we want to do our part in helping finding a cure!
Andrea Miller, mother to Silas shares their story...
Silas is our family's NF HERO! He started to show symptoms of Neurofibromatosis Type 1 when he was two months old as he developed numerous cafe au lait spots. Now nine years old, Silas has experienced many different symptoms in addition to the spots and freckling such as numerous neurofibromas speech difficulties. Because NF is a progressive disorder and there isn't a tremendous amount of treatment available, doctors have had us take a wait and see attitude with some of these issues. Currently, we are watching his back because of the growth of some of his Neurofibromas and bone development. We just deal with things as they come up and Silas is a real trooper through all of his appointments.
NF Midwest has truly been a beacon through our journey with NF. They sponsor wonderful symposiums with the top NF researchers that share their latest findings. In fact, we found Silas's neurologist through one of their symposiums. They have even hosted educational conferences to help general practitioners better understand NF.
Silas is a typical nine year old in many ways. He enjoys bike riding, video games, and Spiderman anything. When he grows up he wants to work at Subway and be a super-hero. He doesn't realize what a hero he already is to us. We know our toughest battles lay ahead, but with funding, research and support, we know that the fight will not be in vain!
To learn more about Neurofibromatosis, NF Midwest and NF events happening in our area sign-up NOW at the NF Midwest website http://www.nfmidwest.org/ or send an email to firstname.lastname@example.org.