Arria Grace Ingram

Arria Grace has a very rare overgrowth disorder of her right foot, right leg, and right side of her face. She had to have her right foot amputated when she was 9 months old because of the size of the growth and the rate that it was growing. She is now 2 and has had some changes in her body with the overgrowth including curvature of the spine, and increase in severity of the size of her leg and right side of her bottom. The doctors here in Ga have recommended that we see a specialist that is better experienced with genetic disorders. After calling everywhere in the U.K. And the U.S., I found a genetic specialist , genetic counselor, hemotologist/oncologist team at UCLA that offers specialized genetic testing that will tell us exactly what genes are mutated and what she has specifically. This testing will allow us to have the proper care for Arria. Finding out the actual diagnosis of her disorder will tell the UCLA team exactly what we are dealing with in regards to giving Arria the best life possible! They work as a team on Arria's case to make sure that tumors and other cancers associated with these overgrowths are nonexistent and if there are caught in time to remove as well as making sure that her organs are not overgrown. Her spine curving can impart her breathing and that can't be fixed until we know if her condition is genetically progressive (meaning that it will keep growing faster and larger) or non-progressive (stopping growth at puberty).. either way, her quality of life is compromised if we do not do these tests to properly diagnos and treat her.. please help us help our princess! So far the tests are $6500 and $7500 for genetic testings and then also the anesthesia bills , not to mention traveling from Georgia to Los Angeles, California.