When Debbi’s son was born premature and bleeding in his brain, the doctors gave him two weeks to live. Debbi has now been caring for him, along with the rest of her family, for 27 years.

Debbi is not a stranger to hardship. Her husband was a career Marine and was often gone when their children were young. Her family has experienced racial prejudice and harassment because of her son’s disability, resulting in neighbors turning the sprinklers on her son’s nurses or calling the police to get their cars ticketed. A past employer discriminated against her and spoke openly to colleagues stating that the time she needed to take off for family medical leave was problematic. She had frequently encountered doctors who judged her based on certain biases and dismissed her concerns.

Her son required 24/7 nursing, and it was difficult to find ethical and trained nurses. Sometimes he was harmed through negligence, causing more acute hospitalizations. Debbi has had to fight constantly to get insurance to cover his needs and keep him stable. Once, while he was in brain surgery, Debbi had to stand in the parent surgery waiting room and call an attorney because insurance would not cover the cost of the procedure he was receiving at that very moment.

Before her son was born, Debbi had experienced some serious health problems with her other children, which turned out to be a blessing in disguise. When her oldest child was sick, Debbi found an extremely supportive pediatrician/physician team. These doctors stuck with Debbi for a long time and took on her younger son’s case when he was born. They got her the training and resources she needed to be a caregiver, and they taught her to be an advocate.