Puerto-Ricans Nelson and Sofia always wanted children, despite their busy careers. In three short years, they were blessed with two children, and life changed forever. Abel was born healthy enough, but they immediately knew Layla was different. After many years of hemorrhages and intestinal paralysis, they found out she had Hermansky-Pudlak Syndome. For now, the family savors the limited time they have left with her, and Layla dreams culinary school. #disabilitypride #hermanskypudlaksyndrome