Hope for Jaicey

Jaicey Lupton is 3 years old as of jan. 3 2018 and we are so happy to celebrate another birthday with our daughter. In May 2017 it was discovered Jaicey has more than 30 arterial aneurysms throughout her body located in the brain, renal artery, both arms, both legs, face, neck, groin, and abdominal aorta. Since discovered we have ran multiple tests with Seattle children's hospital in hopes to find a diagnosis and determine a plan for treatment. We have multiple teams, specialists, and surgeones who work on her case non-stop. December 21st we revceived our test results for whole exome sequencing and once again no diagnosis. At this point in time Jaicey has been entered into a national data base in hopes someone like her May have answers or she may save a child like her in the future. Doctors are baffled with no explanation what is causing this and Jaicey has been entered into 2 research studies with children hospital for brain and vascular anomalies. Currently stuck with no treatment options and severe life threatening complication from rupture or stroke from clotting is a trial she will face the rest of her life. We previously raised about $4,000 to help with constant travel back and fourth and the money it took to care for our daughter during multiple trips to Seattle and family to help care for our older two children back home while we were away and missing work. This fund me will be raised to help in times of need for Jaicey and anything that helps her medically continue to stay healthy, travel and medical costs while away from home. As of date blood testing has stopped and there hope is scientists can help us determine whatever rare disease possibly unknown disease Jaicey has. She is officially as well being referred to undiagnosed disease network as well in hopes they will have some insight and possibly able to get a diagnosis with some of the top doctors and scientists in the world. As well as branching her medical team out to mayo clinic, bostons children, and continued medical treatment with everyone at Seattle children's hospital. The associated costs with travel can be outrageous and this point we will travel where ever is needed in hopes we can find a diagnosis and treatment options. Until then surgery is not an option unless it is a last resort do to her age and fragile complications her arteries can have. Jaicey is not aloud to run, trip, jump, get upset do to blood pressure, be in cold water for more the a few minutes at a time, fly in a plane (unknown complications from altitude), receive vaccines, and so much more that is a part of being 3. These all chance her for rupture which in certain areas would be fatal. We try to keep her safe daily as well as give her quality of life at the same time.. anything helps get us to our goal even prayers for her.. or information that could lead us to a diagnosis. Please share our story.