Sarah's Soldiers

Around Christmas 2011 we noticed Sarah was having apnea when she was sleeping, we had already been to her pediatrician for frequent "wierd" headaches, and to the neurologist. Neurologist diagnosed her with childhood migraines and put her on medication that made her tummy hurt. So I called ENT and set up appt for apnea. ENT saw her and did some testing, and set up sleep study which we had to wait on for 2 months. ENT assured me that she was healthy and couldn't be only taking 2 breaths a minute( which is what I had observed) and that she would not die in her sleep. So now lets fast forward a little, The ENT and Pulmonologist called me with results, ENT stated the results had to be false, because even an obese older adult didn't have that severe of apnea. The pulmonologist said the results were very accurate, and Sarah needed to be put on a cpap machine and another sleep study immediately. The next sleep study showed the cpap didn't help at all so we went to bipap and she ordered another sleep study and an MRI of the brain because it was all central apnea, meaning her brain was forgetting to tell her to breathe! MRI was scheduled emergent. Md phoned me at 9:38pm to tell me my 10 y/0 daughter has Chiari Malformation (a herniation of the brain into the spinal column) and needed to see a neurosurgeon! We were terrified and devastated. The neurosurgeon saw us quickly and told us to schedule surgery soon. Well! He didn't even examine my child, so I started researching. We had to travelv3 1/2 hrs to a specialist. We sent MRI and records with pulmonologist backing/pushing the issue. He saw us on a fri and admitted her the same day for surgery on Mon. He told us she had a 20% chance of being normal and surviving the surgery. He also told us if we wouldn't have found it within a few more weeks she would have went to sleep and never woke up. I am telling you that she was a perfectly healthy baby and healthy up until all this! We had not a clue that we would be where we are now! So 1st posterior decompression was done on July 2, just a few days after her 11th birthday. It was a total failure! She continually deteriorated! We finally got an experienced Neurosurgeon locally and in January 2013, Sarah was back in the OR having the same surgery again plus some. She did have improvement this time for a little while. She was able to come off breathing machine at night. By this point she had been through 5 machines and many sleep studies. Again we knew she had other issues with her brainstem but we were praying for a miracle and complete healing. By May of 2014 she was showing signs of spinal cord damage and her skull was dropping. Her neck was unstable which means she could turn her neck the wrong way and become paralyzed or die. So they took her to the OR again and fused her head and neck.  Sarah has many many symptoms and alot of pain. She has been unable to attend school for about 2yrs now. She is in need of her 4th surgery which will have to been done in NY we live in GA. Her second vertebra has fallen and is kinking her brainstem, causing heart, bowel, bladder, pain, apnea, numbness in arms and legs, choking and other issues. She is  again fighting against having paralysis or death. She is now 13 and fully understands the situation. I am first off asking for your prayers and secondly if you find it in your heart, please donate to help fund this desperately needed surgery.  I have given a brief summary of what she has been enduring for several yrs. Thank you for reading her story and thank you in advance for prayers and donations!