I can clearly remember the day we finally received his diagnosis. It was 2019, and my son was 14 years old. We had already been treating seizures and developmental delay for years. However, I was not prepared for the actual diagnosis.
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This month Desmond will head to preschool and be held and cared for by his community, as is his right. For any parent who has been through an individual health plan or an individual education plan (IEP), you know it is no simple task. I would love to share what this has been like for me and my son.
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Caring for a chronically ill child can be emotionally perilous. As a rare parent, Laura knows that sorrow naturally slips into moments of joy. By practicing and sharing gratitude, Laura gains control and eases those moments of fear and grief. Discover the power of gratitude and learn how the act of giving thanks transformed the way Laura experiences her husband, her children, and her day-to-day life.
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The PMG Awareness Organization is a nonprofit organization of families, caregivers, and medical professionals that support those with Polymicrogyria and raise awareness of this rare disease. Learn more about their goals and upcoming events.
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When I first started expressing concern about Alden’s development, everyone told me not to compare Alden to his big sister, Hadley. I was not comparing. As a mother and a nurse, I knew in my gut that something was seriously wrong. After weeks of second guessing my instincts, I finally caught one of Alden’s atypical movements on video. It was Memorial Day, 2020. He was 4.5 months old. I sent the video to the on-call doctor at his PCP office, who took one look at it and asked us to please bring him into the emergency room immediately. Forty eight hours, an EEG and an MRI later, our family was forever changed.
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