In the early hours of May 15, 2019 Nora was prematurely born in Boise Idaho. Nora was rushed out of our sight and into the world of the NICU. Immediately it was obvious something was seriously wrong. Doctors told the family to prepare for the worst, she was put on a ventilator while the family prayed and waited for genetic testing. When the test came back the family learned Nora has a
KLHL 40 related Nemaline Myopathy. This form of Nemaline Myopathy is the worst and extremely rare. However Nora’s KLHL 40 gene mutated again and she could possibly be the only case in the world with this exact mutation. Nora’s life expectancy is 5 months to 1 years. She has coded 3 times in her short life but she wasn’t ready to go! The family has been told Nora will never move however she does move she moves her little toes and her arms. She silently cries, she sees and she hears she’s a miracle in the making. She was wrote of by some doctors with one calling her a waste of his time and Abortion should have been considered.
Nora’s family decided to pay out of pocket for a med-jet to move her home to Wisconsin so they could get the help and support of family. Nora’s family would like to have Nora home so they can make memories and enjoy life as a family. They would give the world to have the holidays at home with Nora. The struggle to get Nora home has been hard and some days felt impossible. Since getting to Wisconsin Nora as gotten a trach and a feeding tube and is on her way to getting home. Before Nora can come home her parents have to take classes and learn how to take care of Nora and for her special needs which interferes with them having full-time employment. We would like to raise money for Nora’s care, bills, and living expenses for the family. We also ask for people to pray for Nora and pray she gets her miracle we thinks she’s a miracle in the making. We also ask if there is a medical professional who has knowledge of a possible treatment to please reach out to the family.