"The children that are a part of CCA have a strength and resilience about them that many adults cannot duplicate. It is from them and Jordan, where we gain our strength. Multiple surgeries, appointments, therapies, scans, bloodwork, I could go on for hours, but our children rarely complain. They understand it is part of their journey and we need to make the best of it. Sometimes that means video games at the hospital, other times it is the joy that is our CCA retreats.
Emma was born on July 2, 2018, at 36 weeks in Seminole, TX. She was brought to the NICU due to having Apert Syndrome. Apert Syndrome causes craniosynostosis which is the early fusing of the sutures in the skull, the fusing of fingers and toes, protruding eyes, and a pushed in midface. Emma’s midface was pushed in quite a bit and she was bagged for 5 hours in Seminole until the UMC transport team was able to come and get her. They got her intubated and took her via ambulance to UMC where she was placed on a ventilator until she was able to breathe on her own 2 weeks later.
Our first experience with CCA was when Emma was 4 months old and had to have emergency surgery due to a cerebrospinal fluid leak. I did some research and found CCA online. I contacted Annie and she sent me the application for assistance and the instructions on how to return it. At the time we had depleted our savings and were struggling to pay for food, gas, and hotel during our stay in Lubbock, TX. Emma’s medical team is two hours away, so when there is an emergency it takes a lot for us to go back and forth two hours daily. CCA reimbursed us on a majority of our expenses that we struggled to pay during this time.We were so thankful and so grateful for this. It was amazing to have an organization that was willing to help us. When you’re going through these situations, this support means more than I can put into words."
How has CCA given your family hope and strength this year?
"CCA has since assisted us with multiple trips to Sacramento, CA, where Emma had to have two syndactyly release surgeries. My husband and son (whom we did not have childcare for) would not have been able to come to assist me without the assistance of CCA. Emma has a tracheostomy and g-tube and we have to carry a lot of medical equipment with us during travel. This, plus a car seat and luggage, would have been impossible for me to do by myself, and driving to Sacramento from our home in Hobbs, NM, was a 34-hour drive. Thanks to CCA I was able to have the help from my husband that I needed to make the trips. CCA and Annie have been a giant blessing in our lives. Their assistance is so important to families like ours!"
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