Financial Assistance
Do you travel to receive quality medical care? If you do, and need financial help, CCA offers our Patient Financial Assistance Program that will help with the ancillary costs of seeking medical care, such as airfare, gas money, lodging, and food stipends.
Our application process is highly individualized, so please email our Program Director for an application and a list of required documents. Please apply at least four to six weeks prior to your next appointment.
For more information, please contact Annie Reeves at 214-570-9099 or by
e-mail, [email protected].
In 2019, we assisted families on 79 medical trips with an average of $470.00 per trip.
TESTIMONIALS
O
n August 13, 2018, our beautiful twin daughters, Lilly and Ellie, were born very unexpectantly at 25 weeks. They spent a total of ninety-three days in the NICU at Morristown Medical Center in New Jersey. While in the NICU, Ellie was diagnosed with bicoronal craniosynostosis and it was recommended that we take her to Boston Children’s Hospital. During this visit to BCH, we also met with a geneticist who diagnosed her with Muenke Syndrome. This appointment was scheduled just three days before Christmas and we certainly had not planned for these unforeseen travel expenses. As one can imagine, this was a very scary and overwhelming time for us. In addition to the constant concern for our daughters’ health, there were looming concern for our financial stability. We had always worked very hard and were conscience, but now found ourselves faced with unpaid leave from work, mounting medical/travel expenses, and new expenses from the home we had just purchased one month prior to the girls’ birth. Lilly and Ellie also have a four-year old big brother who we were trying to maintain some normalcy for in the complete chaos that was our new normal.
Right after New Year’s Day, we received word that Ellie’s surgery would be scheduled for February 4, 2019. We began to make arrangements for our travel, and while doing this, I somehow came across CCA’s website. After much browsing, we saw that there was an application for financial assistance. This seemed like a dream, as our life was feeling so out of control and upside down. When we received word back that we would be granted assistance for travel to Boston from New Jersey, we felt a weight was lifted from our shoulders. This assistance undoubtably eased the financial burden of spending a week in Boston with infant twins. Furthermore, it allowed us to focus on Ellie and her needs instead of worrying about what the trip’s expenses were going to be and how to pay for it. This peace of mind was priceless. Ellie came through her surgery beautifully and gets to wear a cute little helmet to mold her head to the proper shape for the next six to nine months. Then she will be followed by her amazing surgeon for the next five years and additional specialists as needed. Thank you, Annie and CCA, for giving us the gift of being present with Ellie when she needed us most and for all you have done for our family.
-The DeCataldo Family
My little warrior Malakai was born on February 2nd, 2017 in California. He had a very traumatic birth in which he lost oxygen. He spent 54 days in the NICU where it was confirmed that he had a rare form of Craniosynostosis, which they refer to as Mercedes Benz type because of the way that the lambdoid and sagittal sutures closed in the back of his skull. He had his first cranial surgery when he was only 4 months old in which he had distractors put in. A month after that he got a serious infection on one of the distractors and he had to go into immediate surgery to have it removed. Then four months later he had the last distractor taken out. At this point he had already had four surgeries and three of them on his head. We thought we were done and that this nightmare was all over. But a year after his last surgery we were told he needed another surgery. This time we decided to seek a second opinion and this is when we found Dr. Jeffrey Fearon in Dallas, Texas. After meeting him, my husband and I agreed that we wanted him for what could be Malakai’s last cranial surgery. Malakai was not his first patient with this type of rare Craniosynostosis, so that made us feel even more comfortable because he already had experience with it . Since this surgery was out of state both our insurances denied my son the right to have his surgery where it was more beneficial to him. At this point we decided to try and raise the money because we weren’t going to let financial status be the reason why my son couldn’t have what hce needed. So we started a gofundme, held a fundraising dinner and a Workout fundraiser. But the donations really started pouring in, when Malakai’s story was featured on the local news. So we managed to raise the surgery money but we did not have any money to put towards travel and lodging. This is when I got in contact with CCA and I spoke to Annie, she was so nice and patient with us. She helped us pay for our hotel stay during Malakai’s surgery and covered food cost as well. I am so grateful for CCA because they truly helped us in a time of need. As a parent I never imagined that I would have to be raising money for my son to have a life saving surgery, but it’s organizations like CCA that truly make a difference in the lives of families in need. We also need more people like Annie in this world, truly kind, loving and caring people. Thank you CCA for what you did for our family we truly appreciate you!
-Segura-Rodriguez Family
In October 2016, we received the unfortunate news that our son Matthew needed to undergo a second cranial vault remodeling operation. We made the decision to travel to Dallas, TX to have the surgery, in hope that Matthew would never have to go through this again. Our insurance refused to pay for any of the medical expenses, placing the entire financial burden on us. Having to raise the entire cost of the surgery, plus all of our travel expenses was absolutely overwhelming. I heard about CCA through an online support group and decided to fill out an application. Over the next couple months, the staff were extremely kind and compassionate. They would quickly answer any of my questions. They accepted our application for assistance. They paid for and even booked our hotel at the Residence Inn, where we had an extremely positive experience. They also paid for a large portion of our airfare. I don’t know how we could have done this without CCA. They made an extremely stressful situation just a little bit easier to deal with. I loved working with the staff, and I only wish we had the opportunity to meet them in person while we were in Dallas. I can’t say enough about our wonderful experience with them.
My name is Genny. I’ve been involved with Children’s Craniofacial Association (CCA) since about 2004. Before CCA, I had very low self-confidence and was unable to travel to Texas for 8 years to see my doctors. In those 8 years, my facial structure changed, but the size of my prosthetic eye stayed the same causing me to need two critical surgeries to correct the problem I made several friends through CCA while attending the Retreats and being able to participate in the golf tournament and annual picnics. I have even had an opportunity to assist the CCA office staff in making Wonder packets testimonial and preparing the items for the golf tournament. Driving to Texas was a financial struggle before I was involved with CCA. In the time I’ve been involved with them, it has gotten much easier. CCA’s assistance with travel and lodging expenses has allowed me to get the quality healthcare not available in Florida. The ability to get to Texas for needed medical care has improved my self-image, expanded my confidence, and encouraged me to explore new ideas and new opportunities.
Very rarely in our lifetime do we have the opportunity to experience something truly miraculous, and what we experienced with CCA Kids is nothing short of a miracle! CCA is an assembly of the most devoted, caring and compassionate miracle-makers the world has known. This team is fueled by the love for every child ever born with a craniofacial anomaly. Every person on this team will move mountains and bend over backwards to do everything within their power to help a child. My husband and I are so very blessed to have had the opportunity to see the miracles they perform firsthand. Back in 2007 we were blessed with a beautiful little girl. She was born with a heart of gold and a special smile. Her name is Autumn. Autumn was born with a severe complete bilateral cleft lip and palate. The severity of her condition made it very challenging to find a surgeon with the experience necessary to treat her condition. After months of research we found Dr. Mulliken at Children’s Hospital Boston. Autumn has had six operations, the first being 12-and-a-half hours long. Each surgery has required a one-to-two-week stay in Boston, and the lodging, airfare, transportation and food cost combined are extremely expensive. CCA has been very generous in financially supporting these trips. Without them, they never would have happened! Not only have they assisted us in paying for the trips but every time that we speak with Annie, CCA’s Program Director, it is just a reminder of all the good in the world. She is nothing short of an angel. While we still have several more surgeries to go, Autumn is doing well. Every day when we look at her smile we thank CCA!
William and his twin brother, Scott were born in Oklahoma City, OK on a very icy day in January of 2001. I knew from the beginning that William was born differently, but it took my awhile to convince the doctors. Once a genetic study was performed, we learned that William has Jackson-Weiss Syndrome and then he developed hydrocephalus. His first two craniofacial surgeries were performed in Oklahoma City, but first the neurosurgeon and then the plastic surgeon went into private practice and no longer performed the type of surgeries William would need. His plastic surgeon then referred us to Dr. David Genecov in Dallas and our long journeys began. It takes us anywhere from 6 to 8 hours to travel from our small northwest Oklahoma town to Northeast Dallas and when we first began we were introduced to WCF at Medical City. Two years ago, after being reorganized I was informed that WCF was actually set up to help people outside the USA to gain medical assistance and it was then that I was introduced to CCA. I had received newsletters from CCA in the past, but had never contacted them to help us. I looked up their website and filled out the contact information. It wasn’t long before Annie Reeves contacted me and told me what she would need to take before the board to ask for assistance. It turned out that this first time was going to have to be rushed a little as the meeting was only a few days off, however she soon notified me that they would help us with a certain amount which would go towards a hotel room and fuel expenses. I was so relieved that they were willing to help as these trips are not cheap and we are on fixed incomes. CCA has helped us a couple of times since then and each time is greatly appreciated. It is so nice to know that there are organizations like CCA out there who are dedicated and able to help children like William obtain the medical help that they need. I pray that God continues to bless CCA with the ability to continue to help all those that they can. Thank you, CCA and Annie for all that you do you are truly a blessing.
