Thomasville’s Mayor, Gregg Hobbs, signed an important proclamation recognizing May as Neurofibromatosis Awareness Month. He presented this important proclamation to seven year old Shelby Kate Martin, who was diagnosed at age two with neurofibromatosis.
“I never thought our family would be on this journey,” said Kristi Martin, mother of Shelby Kate. “Having three healthy older children, we expected the same of child number four.”
Neurofibromatosis (NF) is a group of rare genetic disorders which causes tumors to grow on nerves throughout the body, affecting development of the brain, cardiovascular system, bones and skin. The three associated disorders range in severity, extending to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain and cancer. “NF1 wasn’t anything we had heard of, but it has opened our eyes and made us more compassionate towards others,” Martin added.
Affecting one in every 3,000 births, over two million people around the world suffer from NF spanning all age groups, genders and ethnicities. Despite these staggering numbers, the disorder is still widely unknown to the public.
“There are many silent illnesses that you can’t see with the naked eye,” said Martin. “Shelby looks like a healthy little girl. I like to say Shelby has NF1, but it doesn’t have her.”
For the past 40 years, The Children’s Tumor Foundation has driven research, expanded knowledge, advanced care for the NF community and provided patient and family support through information resources, youth programs and local chapter activities.
“Despite The Children’s Tumor Foundation’s tireless efforts, much remains to be done in raising public awareness of NF to help promote early diagnosis, proper management and treatment, prevention of complications, and support for research,” said Martin. “This is why The Children’s Tumor Foundation is observing May 17, 2018 as World Neurofibromatosis Awareness Day.”