Katherine and Ryan – Bravelets

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Katherine and Ryan

Posted on September 14 2014

I am writing this story on behalf of my two children who are no longer on this earth with us.
Ryan woke me up in the early hours on june 19th 2013 with severe chest pain. Ryan was 18 years old and just completed high school and was going to start college on August 19th. He was 6ft 7inches, healthy and never complained. I took him to the ER at the hospital where I worked, thinking it was the best place available. They blew us off and told Ryan that his pain was related to being a teenager and going to the gym.
I checked Ryan into college on Wednesday August 14th, and never saw him alive again. He was in the gym exercising as we had talked about the "freshman 15", he developed severe back, chest and abdominal pain but did not let me know as he felt bad for waking me up in June when we were not taken seriously. We have a text to his girlfriend saying "why go to the doctor's, what are they going to do? He died on sunday 18th from a huge aortic dissection and aortic rupture into his heart.
I did a lot of research and instigated testing for my entire family, both my daughter and myself were diagnosed with Loueys Dietz syndrome. My younger brother has also been recently diagnosed as well and is presently in hospital waiting for his surgery.
Katherine needed to have her ascending aorta replaced electively on June 2nd 2014. She came through the surgery and then developed a fever and cough.
She went on vacation to visit her aunt in Pennsylvania on July 26th.
Katherine developed a cerebral aneurysm which led to her being admitted for a sub arachnoid hemorage, studies showed that her graft was leaking and she was transferred to an acute care faciity. In the next three weeks she had three open heart surgeries to replace her valve and graft and put in intrathoracic drains to treat a mold infection that was found in her chest. The only time this could have happened was contamination during her surgery in June.
Katherine died on August 17th 2014 from the fungal infection that she sustined during her first surgery. She was so incredible brave throughout this nightmare and we are just beginning the fight for recognition for what happened to both Katherine and Ryan and to fight for recognition of early diagnosis and for transparency in health care when something goes wrong and results in the death of 18 and 21 year old amazing children.
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