On snowy January 26, 2015, Aviannah Grace was born, but her unlucky journey began at the 20 week ultrasound. In utero, she was diagnosed with a fatal form of dwarfism. The options from the professionals were dreadful; terminating the pregnancy or delivering a child who would pass away quickly after birth. Avi's parents refused to accept these options and continued to seek pre-natal care and work with a geneticist. The arrival of Avi and her subsequent battling on is nothing short of miraculous. She was diagnosed with Skeletal Dysplasia (Yup, she's a dwarf) but world-wide there are no genetic professionals that can figure out what type of dwarfism she has. There are over 300 types of dwarfism, and she hits the genetic markers of none of them. She is ONE OF A KIND, for real.
Her primary doctor has made the following statement about Avi: "Taking care of Avi is a pleasure, but also a challenge. Her diagnosis remains elusive despite extensive work up including consulation with world leading skeletal dysplasia experts. Without a specific diagnosis we cannot anticipate Avi's possible needs and she continues to develop new difficulties and medical diagnoses. Avi's medical team includes a plethora of physicians including neurosurgery, genetics, ENT, pulmonary, orthopedics, neurology, and urology, in addition to many therapists, an audiologist, and an pedorthist. Luckily Avi has an extremely loving and dedicated family. They are incredible advocates for her and miss a lot of work to get her to appropriate appointments." Dr. Legare, Director Midwest Regional Bone Dysplasia Clinic.
Fun Fact: She loves Cheetos. LOVES THEM. Though she has many speech issues, she is able to say "Cheeeeeee-tooooooow" very clearly.
Her diagnosis, or lack there of, means that many of her medical claims can and are being denied. She has had 42 days in the NICU, 15 days of ICU, 56 therapy sessions, 11 surgeries, and the thousands of miles traveled back and forth to doctor appointments. Her medical bills are quickly approaching the 1 Million dollar mark.
The mileage, apptointments and hotels have taken a toll on Avi and the family, but their hopes for a diagnosis remain high.
All the King's horses and all the King's men (and geneticists) are working on Avi, but resources are running short. Avi is being evaluated for spinal problems, bladder issues, speech and hearing issues. Right now, and most noticeable, Avi cannot walk. In fact, she was walking with the help of a walker for just shy of 2 months but has resorted back to crawling because of the deterioration of the stability to her lower legs and feet. Insurance will not cover the recommended treatment because of a lack of diagnosis. This is the primary reason this account is being set up. Her family is asking for assistance for her needed treatment and covering the uncovered medical costs and travel required to get this little peanut to all of her appointments.
Any donation is appreciated, and 100% of your donation will go towards paying for hospital, specialists, physicians, adaptive medical equipment, home modifications, and the out of pocket expenses associated with this "1 of a kind" child. A dwarf sized amount of your donation will be used for tiny bags of Cheetos.