When the doctor pulled tiny Chantelle’s arms up over her head (a standard for a newborn’s first appointment), her mother thought it seemed to hurt her infant daughter. When Chantelle turned six months old, mom noticed Chantelle’s legs would not straighten and that tiny bumps were forming all over her body. Blood work and a skin biopsy led to the diagnosis of juvenile hyaline fibromatosis.
Juvenile hyaline fibromatosis affects the skin, joints, and bones. It is characterized by skin bumps that frequently appear on the hands, neck, scalp, ears, and nose. These skin bumps can also develop in joint creases making movement painful. Chantelle has already had more than 25 surgeries to remove the bumps or tumors. Spine surgery resulted in loss of mobility, and Chantelle has been in a wheelchair ever since. She takes 20 medications every day just to make it through.
Chantelle now finds her pleasure in playing on the computer at school and wishes for her own Mac to use at home. She would hope that it would include programs that would let her be the artist she dreams of being.