Maiya's friends and family are joining together to raise money to help with her lifelong battle against Progressive Osseous Heteroplasia.
Maiya Elizabeth Colón was born on August 31, 2012 at 33 weeks gestational age. Born 7 weeks premature, Maiya weighed 2lbs 12 oz, and was 15 inches long. Small for her gestational age due to severe Intrauterine Growth Restriction, she was admitted the Neonatal Intensive Care Unit at Strong Memorial Hospital. Considered a “gain and grower” Maiya it was hopeful that she was on the fast track home. At six days of life, Maiya developed a spontaneous cecal perforation caused by Necrotizing Entercoloitis (NEC). Dead intestinal tissue was removed during emergency surgery, and an ileostomy placed. Following surgery Maiya developed peritonitis, a systemic septic infection. Over the next few days, she would experience organ failure, respiratory distress, and edema, causing her body to shut down. Miraculously Maiya recovered. After 77 days in the hospital Maiya was discharged andsent home on continuous nasogastric (NG) feeds.
At home, Maiya continued struggling to gain weight. In February 2013, she underwent ileostomy reversal surgery to reconnect her large and small intestine. It was the hope that this would allow her to absorb more nutrients, and improve her growth. In March, Maiya’s parent noticed small nodules developing under the skin. These nodules appeared on her trunk and head, and at first were no real reason for alarm. By early April these areas, most notably the one located on her back and grown quite large, hard, and contained rough edges. After consulting with numerous doctors, including pediatric surgeons, dermatologists, and a plastic surgeon, it was decided that these growths would be removed and biopsied. On July 22, Maiya underwent her fourth surgery to remove the growths.
The biopsy results of the masses removed were determined to be subcutaneous calcifications, consisted with the formation of misplaced bone.
Testing reveled that Maiya was in fact the newest in a rare form of genetic abnormalities. Her genetic code contains a de novo, or brand new, GNAS mutation. Both of Maiya’s parents tested negative.
Since the discovery of the mutation, Maiya and her parents have traveled to the Children’s Hospital of Philadelphia to meet with leading researchers in the field of GNAS mutations. Unfortunately, the nature and discovery of Maiya’s never before seen mutation has not led to a definitive diagnosis, and additional studies are required. The Colóns will return to Philadelphia in February 2014, with the hopes of obtaining additional information. She is currently followed by multiple service providers, including pediatric surgery, neurology, orthopedic surgery, plastic surgery, dermatology, genetics, endocrinology and GI.