Edit- We ran this race November 13th. For the race recap please visit The Silver Strand Half Marathon for Amazing Amelia. It was one incredible day.
Donations are still being accepted.
Amelia’s Hope for Hearing
Amelia is one amazing little girl.
With an amazing, loving and humble family who are dear friends.
Here is their story.
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 deaf and 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). She is also missing her auditory and balance nerve in both ears.
She spent 3 weeks in the NICU at Rady’s Children’s Hospital in San Diego before she could come home. It was an incredibly difficult time for us, but thankfully we are so blessed 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 who 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. We are hoping to schedule the procedure within the next six months.
Here’s what the STUFT family is doing to help:
The boys and I are going to run the Silver Strand Half Marathon coming up on November 13th. I know I’ve said before that I feel like the ability to run is truly a gift, so this time we’re using our “gift” to help out an amazing young girl.
We are racing in hope that we can in some way help give the gift of hearing to Amelia. (Hopefully the boys won’t have to sport their pajamas this time.)
We are asking for sponsors and/or donations for our race. Even if it’s only a small amount, anything will help. All donations will go directly to a special benefit fund for Amelia.
Check donations can be made out to:
Amelia Heston Benefit Account
And sent to:
1835A S. Centre City Pkwy. #198
Escondido, CA 92025
You may also donate directly through PayPal through a link on her blog, but the family is charged a processing fee. If you do donate through PayPal please email me at firstname.lastname@example.org so I can add your donation to our list.
Everyone who donates will receive a special “thank you” in the mail. I will also randomly select 3 people (US residents only) who donate to receive a package of my homemade Cookie Doughtzel Balls.
Please help give the gift of hearing to Amelia!
Feel free to share, email or pass this post along.
Any help is truly appreciated!