Baby Edna Bonnie was born on October 19th with isolated Pierre Robin Sequence- a rare condition that affects roughly 1 in 14000 babies. When she was still in the womb her chin got caught in her collarbone and did not grow for several weeks. When she was born via emergency cesarean it immediately became clear she could not maintain her airway and was in a life-threatening condition. When eleven days old she had her first surgery – distraction hardware was placed and her jaw broken. Over the next two weeks her jaw was broken twice a day until she was able to breathe on her own.
A gastric feeding tube was placed to give her time to learn to swallow. After forty-seven days in the neonatal intensive care unit, Edna came home. On New Years Eve, days after having the jaw hardware surgery removed, she developed seizures and had to be rushed to the emergency room. After more testing, she came home, however, she failed to gain weight. She responded violently to her feeds and was re-hospitalized for dehydration and malnutrition. After two more weeks of hospitalizations and tests, it was determined she had a severe milk allergy. Again,
Edna came home and had one beautiful week as a joyful, playful baby. Then she got sick.
A cold turned into pneumonia and she was put on a ventilator in the pediatric intensive care unit. While on the ventilator she contracted three ICU super bugs that did not respond to antibiotics. After weeks sedated on a ventilator and a blood transfusion, it was expected that
she would need oxygen support for the foreseeable future. Edna surprised everyone by being able to breath on her own. Twenty-four hours before we were going to take her home they opted to extend her feeding tube into her small intestine. The placement went terribly wrong, puncturing the small intestine. Edna is now septic, fighting for her life. She is on the Medi-Vac
helicopter now heading to a hospital in San Fransisco for an emergency repair surgery that she might not be strong enough to survive. Edna has spent well over one hundred days in hospital in her five months of life but she continues to surprise everyone with her resilient spirit.
Edna’s parents, Alice and Ray, have been by her side everyday. They take turns switching off to make sure she is never alone. The hospital has become all too familiar for them. Edna’s big sister Cynthia that is five can’t wait for her baby sister to come home and her family to be whole again.
Edna needs all the love, prayers and support possible. Even with insurance, the medical bills have become a huge financial hardship. Ray and Alice are both professors at their local college and as we all know, aren’t paid what they deserve. They had to go down to one income so Edna wasn’t alone in the hospital. I’m hoping to raise this money to help them with medical expense, lost wages, and travel costs so Edna can have her mom, dad and sister by her side in at the
hospital in San Fransisco. All donations welcome. All donations are in US currency for all of our Australian and Kiwi family. Please share this post. Mahalo for your love and support. Aloha.
Disclaimer for verification purposes: The person that started this gofundme campaign is Annie Clifford, sister of Alice Neikirk. I live in Kihei, Hawaii. These funds will be transerred directly to Alice Neikirk's bank account in Fresno, California to pay for various expenses they have incurred, i.e. medical bills, travel expenses, hospital stays, hotel rentals, rental cars, and food as well as any personal needs, mortgage, utilities, and other expenses.
- Jaime Millán
- Hannah Shanks
- Sanjay Prasad
- Melissa Tump
Organizer and beneficiary
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