Your child deserves the best care - wherever it is.

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 he 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.

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.
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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.