Saturday, April 19, 2014
BOARDMAN
Jenn Rice doesn’t mince words when it comes to how she feels about the uncertainty of her young son’s future as a neurofibromatosis patient.
“It’s a wait-and-see, which sucks,” said Rice, who was among the 50 or so people who joined together Saturday morning at Boardman Township Park for the second annual Great Steps Walk for NF, sponsored by the national NF Network, based in Illinois.
The walk is meant to combat neurofibramatosis by raising awareness and money for research. NF is a genetic disorder of the nervous system which causes tumors to form anywhere in the body, at any time.
Jennifer Krawchyk of Leetonia estimated that there are at least 50 people in the tri-county area who have NF.
“The biggest hope is treatment, and eventually, a cure,” said Rice, 34, of Washingtonville. She and her husband, Eric, 34, had never heard of NF before their 6-year-old son, Alvin, was diagnosed as a baby.
When he failed to thrive and grow, the couple, who lived in Connecticut at the time, took him to Boston Children’s Hospital, where he was diagnosed. Alvin’s young body was covered with some 200 “cafe au lait” spots at birth. The spots are so named because they are the color of coffee, she said.
Alvin now has three tumors, caused by NF, on his brain, Rice said. The tumors are monitored monthly at Akron Children’s Hospital to check for growth. If any growth is detected, Alvin will have to undergo chemotherapy, she said.
Read more about thwalk and area residents who battle the disease in Sunday's Vindicator or on Vindy.com.