Support Nora's Medical Journey and Family

Our youngest granddaughter Nora was born August 7th, 2024 with a rare genetic condition. The following is her mom's story of what has turned their world upside down:

We are The Forgets and we are embarrassed to ask for help. We need to ask to keep our home and help with mounting medical bills. We both work full-time hours and have been thrown for a loop after our youngest was born with an extremely rare genetic condition. Our true one in a million (1 in 1,614,000) newborn. Our oldest, Leah is 4, and goes to preschool full time and absolutely loves it. Our youngest, Nora, was born at the beginning of August. She struggled to gain weight in the hospital after birth but had just reached the line that we were able to go home after 3 days. The next 5 weeks were filled with pediatrician appointments for multiple weight checks. Nora is a breastfed baby, and we spent 5 weeks working with lactation consultants and the pediatricians to figure out why she was not thriving. We went to mom pumping exclusively, giving bottles and tracking every ounce she ate. At 5 weeks we drove an hour and half to Connecticut Children's hospital to see a gastroenterologist, as Nora was also suffering from reflux. The Dr's. suspected she may have had a weak muscle in her esophagus or possibly malrotation of her intestines. They sent us for an immediate swallow study where we saw that neither were the case. The big news was that at 5 weeks old she finally had gained back her original birth weight. (Typically, week 1 of life accomplishment for babies). With the pediatrician on mom's cell phone in the Gastroenterologist office the decision was made that Nora needed to be admitted to the hospital right away for extensive testing to see what was causing her weight issues. We headed to Yale hospital in New Haven per the pediatrician’s recommendation and the gastroenterologist’s recommendation. The first night broke mom as they stuck Nora with several needles to get blood and placed an iv. Most of the night was spent in the bright and noisy ER before we were transferred to the medicine floor. We were there for over a week! Nora came home with 2 medications given every 6 hours for a salt wasting condition that was awaiting genetic testing. We had follow ups with a nephrologist (kidney Dr.) and her pediatrician. Fast forward to 7 months old Nora is staying consistent on the growth curve finally. Still getting all breastmilk thanks to mom for her hard work on that. Starting solids which has been difficult for Nora and her gag reflux. The BIG news.... her genetic testing results finally came back from the blood they took in September. Nora has a recessive genetic disorder called Hypoaldosteronism. Her body does not make aldosterone to absorb sodium which is an essential function of the kidneys. Nora also has had over 100 blood tests on her medical record already and will be going for renal function panels for the rest of her life. (at least once a month for the foreseeable future.) We are very happy to finally have an answer and can establish a care plan for Nora but boy this was an expensive experience. We do have health insurance, and it has covered some of these expenses, but we find ourselves with over $30,000 in medical debt on top of our other bills and mortgage. We love our home while it is on the smaller side it's perfect for us and we are fighting the bank to keep it. After buckets and buckets of tears and many breakdowns we have decided we have to ask for help. Our mortgage needs to be paid, and Nora has bills that need to be paid so that she continue care with her medical team. We have just started a new medication for Nora based on her diagnosis and she is really thriving. The kicker is... It’s $900 for a 1-month supply and insurance only covers 20%. Mom went back to work 40 hours a week after a 12-week maternity leave. I juggle Noras appointments around my work schedule, but sometimes last-minute tests pop up and I have to miss a day, or Leah is sick (preschool germs, yuck) and I need to call out, but I am still a full-time employee. Dad works 50+ hours a week as a restaurant manager. We just need some support to get us back on our feet. We love our community, our family, and our friends. We thank you for all your love and support!