Marfan Syndrome is a progressive disorder of the Connective Tissue in the body, meaning it affects heart, lungs, eyes, ligaments, joints, and other cells and tissues. Collin was diagnosed at 4 months old and his family was told at the time that he was the youngest case ever diagnosed. Collin had done a commendable job dealing with his medical condition for almost his entire life.
Over the course of his life, he has had to have 5 eye surgeries to date and has undergone constant monitoring of his heart as the dilation of his Aorta has progressed. The risk of an Aortic Aneurysm (rupture) is the most life threatening danger of this disorder and in Collin’s case this can happen at any moment. Should that happen, death is almost immediate so he has no option but to have the surgery immediately. He also has a Mitral Valve Prolapse (leak with regurgitation) as well as a small hole in his heart between chambers. Both have to be repaired along with his Aorta.
The dilation of his Aorta has now progressed to the point that he has to have immediate open heart surgery in order to prevent his Aorta from rupturing. The surgery on his Aorta is a projected 7 hour surgery alone. At that time, they will also be restructuring/reinforcing the walls of his heart in order to try to repair the Mitral Valve Prolapse. If, during surgery it doesn’t appear like this technique will correct the prolapse, he will have to have an artificial valve inserted to replace the leaking one. If the artificial valve has to be inserted, he will have to be on blood thinners for the rest of his life, so it is hoped the restructuring of the heart walls will be successful. In addition to the very serious surgery on his Aorta and the valve repair, they will also be repairing the hole between the chambers in his heart. Due to the length and complexity of the surgeries, the CardioThorasic Surgical Team at the University of Kentucky Medical Center requires use of the surgical operating room for an entire day.
Post surgery, he will be in intensive care for 2-3 days with a subsequent 7-10 days in the hospital for recovery, assuming the surgeries are a perfect success. His family has been told Collin will have to be out of work (with 24-7 care upon being released from the hospital) for at least 2 to 3 months. So in addition to medical bills, he will be unable to earn any income to pay his cost of living bills for some time. And as you can imagine, this is going to be a very expensive surgery and recovery.
Through your kind donation to this GoFundMe fund, hopefully Collin will be able to cover much of the expenses of the surgery that are not covered by his health insurance and be able to cover his ongoing cost of living expenses during his recovery. In spite of the fact he will have to have other surgeries over the course of his life, should he be fortunate enough to receive more money than required for this serious heart surgery and recovery, his family wants you to know that 100% of any excess funds will be donated to the National Marfan’s Foundation, a great organization which is furthering the research for helping the 1 in 5000 people who are afflicted by this disorder. https://www.marfan.org/
- Martha Oram
- Amy Oram
- Maria Gnas
- Earl Hensley
- Earl Brady
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