Our beautiful little Nora was born July 20, 2017 after complications leading to delivery by c-section at 35 weeks. After 9 days in the NICU, we got to bring her home and thought she was growing and developing healthily just as she should. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
Then she had her first seizure on October 26, 2017 at just 3 months old. It scared us and it was an emotional 3 days in the hospital. We were uncertain about what her future held, but kept pushing on full of hope. On February 21, 2018 we finally had some answers…just not exactly the answers we’d hoped for. At 7 months old, Nora was diagnosed with Cyclin-Dependent Kinase-like 5 (CDKL5). Being diagnosed with CDKL5 has been a hard pill to swallow. CDKL5 is a rare X-linked genetic disorder that results in early onset, difficult to control seizures, and severe neurodevelopmental impairment. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
There is not an exact life expectancy, so we treasure every moment of every day we get with our Nora. She has severe development delays, and vision problems and currently works with an occupational and physical therapist. She’s had up to 6 seizures every day, despite trying 3 different medications. The medical expenses to help Nora cope with this devastating disease are overwhelming. She will most likely require a lot of medical equipment as she grows, along with added specialists and therapies.

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