In June 2007 we took our three and a half year old daughter, Kaitlyn, to have what we thought was an innocent murmur diagnosed. That was the day our lives were turned upside down. The cardiologist diagnosed her with Marfan Syndrome, a rare genetic disorder, based on her extremely enlarged aorta and severe mitral valve prolapse. Kaitlyn was put on a medication to slow the growth of her aorta and delay surgery. We also took her to an ophthalmologist and an orthopedist where she was diagnosed with severe near-sightedness, a curved spine and flat feet, which required new glasses, a back brace and foot orthotics along with regular checkups. Through all the changes that were occurring in her daily life, she remained our inquisitive well-mannered, mature, kind, bright, caring, sweet and exceptional Kaitlyn.
In the middle of all of this darkness, Kaitlyn was referred to Make-A-Wish® Hudson Valley. In April 2008, Kaitlyn’s wish to meet the princesses at Disney became a reality. While we were all looking forward to a break, nothing could prepare us for what Make-A-Wish® had in store for us. They thought of every conceivable way to make our trip the greatest experience for Kaitlyn while still covering all the little details. They provided luggage for us, a limousine to the airport, presents in the room everyday all making us feel like the most important people there. For one week Kaitlyn forgot about her condition and doctors appointments and was just a four-year-old girl, playing princess. It was one of those moments as parents where we took a step back, looked at our daughter in a blissful state and thought, "This is what happiness is." The pure joy and excitement is indescribable.
When Kaitlyn was diagnosed, never did we think it was terminal. We just always thought she would be forced to unfairly deal with more than a child should ever have to. Unfortunately, Kaitlyn wasn’t responding to the medicine and her aortic valve continued to grow. On September 8, 2008, with no other option, nor time, Kaitlyn underwent surgery to repair her aortic value and mitral valve prolapse at John's Hopkins Medical Center. The surgeon was the leading specialist in this field and had 100% success rate; we were told Kaitlyn's case was nothing different than what he'd seen. We saw this as just the first of many surgeries Kaitlyn would need. The surgery lasted over 8 hours, much longer than originally anticipated but was called a success. However, things took a turn for the worse pretty quickly. Within a few hours of Kaitlyn coming out of surgery, we had lost our daughter.
There is nothing we can ever do to fill the void left in our hearts. We are constantly left doubting the choices we made; wondering if there was anything we could have done differently to change the outcome. It has been five years now without our daughter, without our princess. There's not a day that goes by that we don't think about her. Our happiest and most lasting memory is when Make-A-Wish® made Kaitlyn’s wish come true, in a way we never could have done on our own. The smile on her face during that trip will forever be in our memory. Helping bring that same feeling to other children brings us a sense of peace and comfort. For the past two years, we have been committed to working with Make-A-Wish® Hudson Valley to raise money to allow other children in our area the same opportunity that Kaitlyn had. We can only hope that some other parent can witness their child in the same euphoric state after going through the pain and suffering of a life threatening illness.
There are over 160 children waiting to have their wishes granted. Please support Make-A-Wish® Hudson Valley and our family by donating or joining us at our benefit on April 2, 2016. With the average cost of a wish ranging between $7,500 and $10,000 your support can make a world of a difference in the life of a wish child.
Thank you for your consideration.
Jessica and Jason Anthony
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