Here is the story of Riley Grace Runyon. Her story starts like so many others, two people fall in love and decide to have a baby. Everything was as normal until just a few weeks ago. We went to Becoming Mom to find our her gender, later that day we received a call saying they found an issue and to follow up with our Dr. a few days later we were told they found some fluid on Riley’s chest and neck. From there we went to Bethesda North for additional testing. That day we learned some very bad news. Riley was diagnosed with two conditions. First off we learned that she has Turners Syndrome, which is a rare condition where she only has one X chromosome. This would cause her organs and body not to develop properly. With hormone treatments and therapy this is not as bad as it could have been. But then we are informed by our OBGYN that she has a rare and very fatal condition known as hydrops. Hydrops is when the fetus has a large amount of swelling on the chest, neck, and brain. The chance of her surviving with Hydrops is about 5% without the Turners syndrome. With Turners it drops to 1%. This will cause her heart to one day stop beating. I can’t even begin to describe the emotional toll this is and will take on Alexis and I. One of the hardest battles we will face is the financial burden this places on us. I will have to take a significate leave from work which is unpaid and the bills will pile up fast. Doctors are not only very concerned with Rileys survival, but there is also a chance of Mirror syndrome with Alexis which could potentially cause a variety of issues. Due to this, we have to go in for weekly ultrasounds and doctor visits, so the bills will pile up very fast even before birth. Many tests that we will be doing in the coming months are not covered by insurance as they are deemed"voluntary". All funds raised will go towards dr bills, living costs while on leave. Also any funds that are left over will be placed into a college fund for Aaron.
Thank you all for reading our story.
Adam, Alexis, Aaron, And Riley
- Doug Hankinson
- Ellen Scherrer
- Kevin and April Haukebo
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