Mia Frears Medical Fund
Donation protected
Mia has been diagnosed with a debilitating disorder called Fibrodysplasia Ossificans Progressiva also known as Stone Man Syndrome. F.O.P. is a is an extremely rare connective tissue disease in which muscle tissue and connective tissue such as tendons and ligaments are gradually replaced by bone. Forming bone outside the skeleton that restricts movement. This process generally becomes noticeable in early childhood starting with the neck and shoulders and proceeding down the body and into the limbs. Extra skeletal bone formation causes progressive loss of mobility as the joints become affected. Inability in opening the mouth may cause difficulty in speaking and eating. Overtime people with this disorder may experience malnutrition due to their eating problems. They may also have breathing difficulties as a result of extra bone formation around the rib cage that restricts the expansion of lungs. The disease is caused by a mutation of the body's repair mechanism, which causes fibrous tissue (including muscle, tendon, and ligament) to be ossified spontaneously or when damaged. In many cases, injuries can cause joints to become permanently frozen in place. Surgical removal of the extra bone growths has been shown to cause the body to "repair" the affected area with even more bone.
Organizer
Dawn Wells
Organizer
Tonawanda, NY