7/21/2025 The Burden DivideEvery two years in the month of July the deadline for redetermination of Medicaid coverage…
Living with GSD 1B is a Chronic Crisis ExistenceOur daughter was born with a rare genetic metabolic disease called Glycogen Storage Disease Type…
Things I Wish Providers Had Told Me: 7 Lessons Learned Raising my Differently-abled SonMy son was born 14 weeks premature. The odds were not in his favor, yet…
Advocating for CJ Always (HLHS/Kabuki Syndrome)On the night my son is born, he is whisked away by ambulance to Children’s…
Transplant for Severe Aplastic AnemiaOn July 20th, 2019 my husband Chris and I were married. Our daughter, Alayna danced…
The Fleeting Nature of Good DaysMy daughter Bella was born 4 years ago with a very rare genetic disorder called…
The Weight of the Family OutingMy son found a broken dinosaur mood ring in the bottom of a drawer as…
Please Presume CompetencyWe don’t get to decide what children can or cannot achieve as adults. Our job…
