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Kaeydan Webster was a 9 year old boy living with San Filippo Syndrome. San Filippo is a rare genetic condition that causes fatal brain damage effecting 1 in 70,000 children. Kaeydan fought this terrible syndrome his entire life. Kaeydan was in and out of the hospital countless times due to this terrible condition leaving his mother in an incredible amount of debt. Kaeydan’s first major surgery was in January 2018. He had gone into the doctors to have a check up on his heart before having surgery to have a G-tube inserted since he had just lost his ability to swallow and was no longer able to eat food by mouth. During an ultrasound of his heart during this visit, the doctors had found that Kaeydan’s heart was barely beating. He had to be rushed to Children’s Hospital to have emergency open heart surgery to repair his heart. Kaeydan came out of this surgery healthier than ever. He was making terrific progress while he recovered in a cardiac rehab facility. During the first week back to school, Kaeydan was again rushed to Children’s Hospital because of severe difficulty breathing. At this time Kaeydan was admitted into the PICU for two weeks. He was then put on an oxygen tank permanently because his lungs were no longer functioning the way they used to. Kaeydan’s body had to work five times as hard as a normal 8 year olds just to be able to breathe. He was then discharged from the hospital and things were beginning to look hopeful again. He was working on coming back to school when he had to be intubated and flown to Children’s Hospital. This time Kaeydan was admitted into the PICU for three weeks while doctor’s worked hard to help Kaeydan. He spent his 9th birthday in the hospital. His family and teachers surrounded his bedside celebrating his life. Everything was looking hopeful again and Kaeydan was discharged from the hospital. He was doing well at home and eager to return back to school. Sadly, Kaeydan passed away on November 12, 2018. While at home, Kaeydan stopped breathing and his mom did everything she could to bring him back. Unfortunately, Kaeydan’s battle with San Filippo was lost that night. Kaeydan and his mother, Ms. Kirby, are two of the strongest, most dedicated fighters you will ever meet. Ms. Kirby did everything she could possibly do to make sure her son was happy and healthy. A characteristic of San Filippo is difficulty sleeping during the night. His mother spent countless, consecutive nights staying up with her son, making sure he was as comfortable as he could be. On top of these countless, sleepless nights and long-term hospital visits, Ms. Kirby did her best to continue to work, but at times this became impossible. Kaeydan is Ms. Kirby’s number one priority and she sacrificed everything to ensure that Kaeydan was getting the best treatment possible. Because of this, Ms. Kirby ended up losing her home where her and Kaeydan were living. She is also now in a tremendous amount of debt because of the multiple surgeries and long term hospital visits. Any amount of money donated will be used to pay down the medical debt the family sustained from this nightmare.  Your donation is a HUGE help to his mother during this extremely difficult time.


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