Over The last few years Hope has had a lot of health issues requiring a lot of doctor apts and hospital stays. Hope has a genetic disorder that at this time doesn’t have enough research to provide a clear treatment path. Right now we are basically treating her health issues and problems as they arise until more genetic research is done and can give us a better path for treatment: she sees

a neurologist

gastroenterologist

orthopedist

Cardiologist

Endocrinologist

and more.

Hope has a CACNA1 related disorder which causes skeletal issues, because of this she will have to have plates put into both her legs to straighten them. CACNA1 gene disorders also cause heart arrhythmia which is why she sees the cardiologist, she is already diagnosed with a heart murmur. We are at the beginning stages of learning how and what to do to keep Hope happy healthy and comfortable. Unfortunately there is not a lot of research on the CACNA1 gene and it’s basically a waiting game as geneticists do more research and gather more genetic Information from testing others who have the gene.

Over the next year she is looking at two significant hospitalizations that will include testing and surgery. One of these involves a three day hospital stay (which she’s done already) again that could potentially run longer based on how those first three days go.

it’s a long road ahead of waiting, wondering, testing and treatments

I am starting this go fund me to raise money to get Hope some supplies for these stays, coloring books, pens and markers, blanket, pillow, comfy Jammie’s, slippers and other things to make these stays a little more bareable: we are also looking for people to volunteer to visit her and keep her spirits up once we know when some of the stays will be. We appreciate any help or donations and if not she would even love some encouraging words, a visit at the hospital, a note or a video even saying hello!