Our daughter Amelia was born on June 26, 2009 in Encinitas, CA. After and uncomplicated pregnancy with no problems suspected, we were shocked when Amelia was born with multiple craniofacial abnormalities.
Her doctors diagnosed her with facio-aricula vertebral malformation spectrum. Her symptoms included cleft lip/palate, eyelid colobomas (missing part of her right eyelid and most of her left eyelid), and a small VSD (hole in her heart). We also discovered soon after that she is deaf and is missing her balance and auditory nerves in both ears.
She spent 3 weeks in the NICU at Rady's Children's Hospital in San Diego before she could come home. That was an incredibly difficult time for us and we are so lucky to have a strong and loving support system with our family and friends.
Amelia has been through 8 surgeries already which include her initial cleft lip/palate repair and eyelid reconstructions. She is doing amazingly well and we could not be more pleased with her progress.
Because of the nature of her hearing loss, she is not a candidate for cochlear implants. She is however, a perfect candidate for an auditory brainstem implant (ABI). The ABI is the only device clinically proven to restore partial hearing ability to people without auditory nerves. Unfortunately, these implants are not approved by the FDA for children under 12 years old in this country. We have been in contact with a doctor in Italy, Dr. Colletti, who has been effectively implanting children with ABIs and has achieved great success.
This is a very expensive procedure and is not covered by our insurance. The procedure itself costs $90,000 which includes testing, surgery, and the implant device but does not include airfare and accommodations. Dr. Colletti has informed us that we will need to stay in Verona for 4-6 weeks because the ABI cannot be activated right away and Amelia will need to be monitored closely.
Anyone that knows our family well knows we have a hard time asking for help. However, we want to do what is best for Amelia. We are humbly asking for donations for this once in a lifetime opportunity to give Amelia a chance to hear. The younger she is when she receives the implant, the greater her chance of success so we are hoping to schedule the procedure within the next six months. With your help we can change the life of one amazing little girl!