support EMMA 's unknown battle

On June 20, 2015 we welcomed the happiest little baby girl, Emma, into our lives. To our surprise our journey together as a family began with Emma being taken to the NICU directly after birth for evaluation. The fact that something was wrong, and that she could possibly have a syndrome was a complete shock to us, because we had done genetic testing during the pregnancy, and all of the tests had come back negative. Watching our tiny baby endure test after test since birth has been extremely hard, but we knew we needed to stay strong for our daughter. After a month in the NICU we left with more questions than answers, but we were told that Emma’s case was very rare, and that she would need to have a G-Tube surgically inserted in her abdomen, so she could get enough nutrients to support her growth. Emma had a her G-Tube surgery at Oregon Health and Sciences University, home to some of the very best doctors and specialists in the area, and we were told by multiple doctors that they had never seen a case like Emma’s in their entire medical career. Thankfully, the surgery was a success, and we got to take our precious baby home for the first time when she was one month old. Although we were thrilled to be home we had a long list of doctors and health care professionals to follow up with. The past year has been a whirlwind of paperwork, appointments and consultations. There are some weeks where we have had as many as six different appointments, but seeing the progress that Emma makes it all worth it.

Emma is a truly unique and beautiful individual who rarely fusses, and always greets people, even doctors, with a smile. She has a pleasant demeanor, and is so tolerable of doctors, tests, surgeries, etc. As parents, we are often asked how we stay so calm and strong through this journey, and we always respond the same, "It's hard, but she is the happiest little girl, she helps us stay positive.” Our daughter is a survivor and her strength and determination is a source of inspiration and hope for us. In the past year we have watched Emma grow, and along with her doctors, watched for any signs or symptoms that can help us determine what kind of genetic syndrome she has. We have had many hard times and worries for Emma's future, because there are so many unknowns, and having an unknown syndrome that may not even exist yet in medical books makes it harder to get her expenses and equipment covered by insurance. Like every parent we want to give our child everything she needs. Our goal is to provide Emma with all the equipment, specialists, therapies and medical procedures necessary to give her the best possible outcome, while being there for her 100% every step of the way. As we are getting more information from Doctors and specialists about the types of things Emma will need it has become apparent that we will not be able to cover all of her expenses, even though we both work in addition to caring for Emma, so we are hoping to raise some funds to help with her expenses that aren’t covered by insurance. This will allow us to focus on Emma, and support her growth and development as she continues to battle her unknown syndrome. We thank everyone for their contributions and caring hearts.


Sincerely,
Salazar family