Help baby Nora overcome a rare heart condition

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Help baby Nora overcome a rare heart condition

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Hi! My name is Molly, and on June 04, 2025, I became great aunt to 5lb. 7oz baby Nora. (Isn't she adorable?!) Nora has done a lot of living in her few weeks and has spent them all at Children's Hospital of Wisconsin because she was diagnosed with a rare congenital heart defect prior to birth. Nora spent several days in the NICU before being transferred to the Cardiac ICU, and, at only nine days old, she underwent her first open-heart surgery. Her condition is so rare, that Children's Hospital of Wisconsin sees one case of it per year, so they had to first consult with Stanford University's Lucille Packard Children's Hospital which pioneered the surgical treatment for this condition. While Nora is a fighter and has recovered well from her initial operation, the surgery was not as successful as hoped, and she underwent a cardiac catheterization to determine the best next steps. The next steps are rather big for a little baby. Nora will be leaving via a med-flight in the next few weeks to be seen by the pioneering specialists at Stanford in California. If that wasn't a big enough step, Nora will need to remain there for several months and then have to travel back-and-forth as she undergoes and recovers from several additional open-heart surgeries.

While that means it will be a long time before Nora gets her first look at home, it also means that my amazing niece, Jess, and her wonderful husband, Alex, are facing at least several months of already mounting hospital bills, constant travel between their home here in Wisconsin and Nora and her care team in California, and rapidly exhausting leave time from their jobs. Jess has dedicated her life to helping others--from her crew of rescue animals to humans--even making it her career as an occupational therapist. My hope is that you'll help me to help her and her husband as they dedicate themselves to helping Nora live. All donations you provide will go directly to Jess to support their care for Nora.

Details of Nora's condition:
  • For the technical types out there, Nora was diagnosed with 22q11.2 deletion syndrome also known as DiGeorge Syndrome, which means she's missing part of her 22nd chromosome. Nora's specific heart condition is Tetralogy of Fallot with pulmonary atresia and major aortopulmonary collateral arteries.
  • For the non-technical types, Nora's heart has some thickened areas, and her pulmonary arteries are extremely small. The result is that her heart has difficulty efficiently and effectively moving blood to her lungs leading to poor oxygenation of her blood.

Organizer and beneficiary

Molly McKnight
Organizer
Fort Atkinson, WI
Jessica Guss
Beneficiary
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