When 3-year-old Gabby was born with a rare disorder called vanishing gastroschisis, her family knew they had to do everything to help their daughter get the best care possible; even if that meant moving far from their home and extended family.
After Gabby faced surgery, an investigational treatment, and a near-fatal infection, her family was faced with medical bills and state Medicaid red tape when they tried to apply for a Medicaid waiver. The family decided to move to another state where their daughter would be able to receive treatment without the insurance worries.
Today, the 3-year-old and her mom, Tammy, attend the National Organization for Rare Diseases (NORD) meeting on Short Bowel Syndrome, a result of the vanishing gastroschisis, which Gabby will live with for the rest of her life. They are both active as NORD advocates for rare diseases to raise awareness for the need for policy changes on Capitol Hill.
