Cameron has had eleven surgeries to date. Along with the "typical" Apert issues he has also had several other issues that aren't known to be related to the syndrome. When he was born he was diagnosed with something called Esophogeal Atresia. This is where the esophogus isn't attached to the stomach. This was repaired through a very intense surgery when he was four days old. He was also diagnosed with a malrotation of his intestines, excess fluid in the ventricles in his brain requiring a VP shunt, and a heart defect called sub-aortic stenosis. The heart defect has required two Open Heart Surgeries, the last one was this past December.
Because of the fused sutures in Camerons skull he has also had a surgery to repair that called a Frontal Orbital Advancement. He had this surgery when he was six months old. This allowed his brain to have the room it needed to grow and develop in the most normal way possible. He will need another skull surgery in the future to increase that room as his brain continues to grow. Then another surgery is done when he is around eight or nine called an RED(Rigid External Device) to expand his mid-face and give the bones in his face a more normal appearance, and to give his small canals more room so that breathing is easier, and so that sinus issues aren't as big of an issue.
Apert Syndrome is complex. In the past five years we have been thrown into this crazy world and it hasn't been without fear and heartache. Its the most difficult thing in the world to hand your most precious possesion over to have major surgeries. It's extremely stressful to have a child that has so many complex issues, but it has also been the most incredble experience of our lives. Cameron is the most amazing thing I have ever known. His ability to exude joy and happiness in the most complicated circumstances has shown us so much about what it means to know Love. It has shown us how to experiance life to the fullest, and to understand how to live in the moment and to not take anything for granted. We are beyond grateful for Cameron and so proud to be his parents.
We created this GoFund me page because honestly, this life doesn't come without extreme financial burden. Because Cameron has so many complexities we travel to Boston Childrens Hospital for his care. This hospital has an exuberant amount of knowledge when it comes to treating children with Apert Syndrome and they have been our saving grace when we have had to hand him over for heart surgeries. They are well versed in children with this sydrome and we couldn't imagine having his care anywhere else. With that being said, financially it takes its toll. Our insurance has had to be changed multiple times because of the change in the hospitals acceptance, and at best our policy is a 70/30 plan. We don't complain about this. When we decided to make this hospital our place of care for Cameron we knew this would mean many different things financially. We knew that humbling ourselves in front of our friends and family would be par for the course in order to provide Cameron with this world class care. We knew that it would be hard, and it is. But with the love and support from our friends, family, and communty, we have always met our need to get Cam to Boston. We have always been able to get him the care he deserves. We created this page as a means to help us provide financially for Camerons needs, mostly during times of surgery. We are grateful for all of you, and for loving our most precious little Cam. Please continue to pray for us on this journey.
All our love,
The Elliotts- Paul, Jessica, Cam and Max
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