Our daughter, Emily Shae, is the most amazing, funny, strong, brave, resilient, silly, lovely angel ever!

Emily is highly medically complicated. She is immuncompromised. Emily also has a dysautonomia, Visceral Hyperalgesia. Her esophagus is completely immobile & she has had chronic throat pain for 2 1/2 years. Her colon is partially grossly enlarged. She has a very difficult medical history. Emily has had 131 surgeries so far. This includes TEF atresia at birth, open heart (ASD & PDA) surgery, major reconstructive sinus surgery, TEF H-type, & laryngeal cleft repair and so many more.

Emily has another huge surgery coming up. Emily will be having a Cervical Fusion September 25th.

So, We've been monitoring Emily's neck. Emily has been complaining about throat pain for about 2 and 1/2 years. She has had multiple Scopes, x-rays, scans CTS, etc. With all of the specialist we've gone to , we decided to take her to neurosurgery about 6 months ago. They wanted to check the status of her spine. She does have scoliosis pretty bad. 6 months ago it was discovered that she had a lot neck movement (skull , C1, C2). 6 months ago, she had at 8 - 9 mm of movement. Now she's at 11 - 13 mm of movement. Her neurosurgeon at John Hopkins All Children's Hospital, highly recommends we do surgery to stabilize her neck. If we don't do surgery, there's a high risk of injury or death. If she were to trip and fall, get dizzy and fall in the shower (which she's had done a couple months ago) or if I were to stop short the car, she could become paralyzed and / or die. So, ultimately, we decided to have surgery. The alternative is much worse than the procedure and recovery. It's not a matter of if one of those things were to happen. It's when. We know this because she's been a lot more unstable recently. Stable meaning balanced when walking and / or standing.

The surgery will include a metal brace or as they call it, a cervical cast, screwed to her skull and vertebrae and cadaver bones. They'll put a bigger portion of cadaver bone between the main brackets of the brace and smaller pieces between the vertebrae on either side. She'll spend 4 to 5 days in the hospital and then up to a year and a half of complete recovery. They say there her neck will have a lot more stability as her bones fuse with a cadaver bones within 3 to 4 months. The metal brace & screws will remain in her body.

The ultimate hope is that her neck will be stronger and stable. With this, the hope is her physical stability will be stronger. Her headaches will stop. Her chronic through pain and body aches will go away. Her dizziness and balance will greatly improve.

Simply said.. want her to have a better quality of life.

We had to buy her a new bed this week.

We would greatly We had to buy her a new bed this week.

We would greatly appreciate anyone who is willing and able to help us a bit to cover some of our additional expenses we have occurred and more that is needed.