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Rett's Roost The Goodman Family


The Goodman Family

Addie Goodman can light up a room with her smile. Her shy, quiet demeanor melts away once she gets to know you, and she lets you into her funny, creative, beautiful spirit. Her compassion and empathy for others is fierce. She and her older brother Emmett are thick as thieves and have a sibling relationship parents dream of. Here is her story. 

In 2014, the Goodman family began noticing some odd symptoms in their youngest daughter, Addie. Addie became symptomatic overnight with excessive thirst and urination. She began to lose weight and was getting up multiple times a night to use the bathroom and drink tons of water. After demanding a consult with an endocrinologist at Boston Children’s Hospital, Addie was diagnosed with Central Diabetes Insipidus, a rare condition where the pituitary gland no longer produces the hormone to tell the kidneys to retain fluids, and later, Secondary Adrenal Insufficiency. But it wasn’t until 2017, after many consults and a visit to Cincinnati Children’s Hospital that her parents would finally get some more clarity on Addie’s health issues. The primary diagnosis, Central Nervous System Langerhans Cell Histiocytosis, came as a bittersweet victory. Addie’s mom, Angie, recalls, “I had to fight for the diagnosis from a top specialist from Cincinnati Children’s. I was watching my daughter get worse so I felt some relief once treatment started.”

Treatment for Addie is ongoing, as her condition is very rare–potentially lifelong until more research is done. She is on many daily medications, including oral chemotherapy, and will deal with a lifetime of hormone loss. There is a possibility of neurodegeneration associated with her cancer, due to central nervous system involvement. She continues to experience daily symptoms, which is hard on the whole family. Emmett recently confided in his teacher that he worries about Addie daily. Angie suffers from insomnia and post-traumatic stress disorder. “PTSD is real, and you can only be strong for so long,” Angie says. “My health started to falter, I developed high blood pressure… it’s been devastating for all of us.”

The Goodman family attended our survivor retreat at Shilo Farm in Eliot, ME. “Shilo farm was a magical weekend. We enjoyed the intimacy of being with other families who understand.”