This was not detected prenatally. Aubrey faces many medical challenges both now and in her early child/adulthood. Her syndrome requires constant medical testing, therapy, and ultimately multiple surgeries. I am baby Aubrey's grandmother.
It has been very difficult for Emylee and Arnel, my daughter and son-in-law and Aubrey's parents, as they process what this diagnosis means for their daughter. They have struggled since the day she was born with the fears and imaginations that come with the unknown. In addition to their emotional stress, this has been a significant financial stress. Aubrey's first surgery is expected to be sometime in March, or early Spring, depending on her health, weight and other factors. Her parents are facing out-of-pocket expenses in the range of $10,000 to $12,000. There will be costs for helmet therapy and copays for other specialty visits, testing and treatment on a regular basis. In just the first four months their copays have mounted to over $7, 500.
Aubrey's case is so rare that only a handful of surgeons in the entire nation have done surgery on babies with her syndrome. The most experienced in the nation has only done 21 surgeries in his career.
I pray that this story will touch your heart. I pray that well-wishers will contribute to this cause and follow us closely in Aubrey's journey. All prayers are appreciated.
Every donation, no matter how small, adds up & helps a lot. In spite of it all, we do know that we are very blessed! THANK YOU! ♥️
Emylee and Arnel in the delivery room July 21, 2017
From the heart of Aubrey's mother...♥️
Hello friends and family... I'm asking you all for prayers. The last 3 months have been the best and hardest of my life. Our sweet baby girl was born and diagnosed with an extremely rare genetic disorder called Craniofrontonasal Dysplasia (CFND). Several physical features go with this diagnosis, one in particular being a fused skull (Craniosynostosis). Where her skull sutures should be open to allow for brain growth, she has one fused. Her brain has room for now, but because of the fusion, Aubrey will require surgery to reconstruct and open up her closed suture within her first year. She will likely require several surgeries over the course of her life. We have spent many days in her first few months at a slew of doctors offices. We've seen genetics, Ophthalmology, plastic and neurosurgery, audiology, speech pathology, and consulted with cardiology. We've received good news about her organ and brain function, for that there have been many tears of joy! It's the unknown that is the hardest part. Aubrey's condition affects about 1 in 120,000. It is very difficult to find a surgeon who is experienced operating within her population. We have found 2 world renowned surgeons and both have only had 20 and 21 patients with CFND. One of the doctors is out of Dallas Texas and the other is in Santa Monica (Cedars Sinai and LA Children's Hospital chief of plastics). We have received an email consult from the doctor in Dallas and may very well be going to Texas to meet him. We are headed to Santa Monica today. We just ask for prayers as we make a very important decision for our precious little princess. It took a long time for me to be able to open up about this, but it is what it is. I love my baby girl and she is precious and perfect and beautiful! She is so much more than a diagnosis. Her smiles and coos send me to the moon and back! It's been hard, but it will be okay. God hears our prayers.
Baby Aubrey Carol, born 7/21/2017 @ 6:10 pm. 6 lbs 13 oz, 20 inches long
Aubrey meets her parents
Going to our room.......cousin Madison so excited too!
Aubrey meets her brothers, sister & grandmother.
Our baby girl @ 3 weeks old.
Aubrey with her big sister
Aubrey with her big brother, Jake.
Aubrey with her big sister, Alyssa.
Aubrey and Auntie Michelle.
Aubrey loves playing with Daddy!
Almost 6 months
Aubrey's Surgery March 14, 2018
Happy to be home!
The swelling is going down daily
8 days post-op, her 8 month birthday
She's our WARRIOR & our HERO!
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