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Rylee Grace was born into the loving arms of her mother, Amber, and father, Andrew, on August 9, 2012. She appeared to be a healthy baby, a beautiful blue-eyed little girl. Her mother and father welcomed her into their hearts, and the extended family shared in their joy.
On November 2, the nightmare began. Rylee made a strange, gurgling noise, had projectile vomiting, and went limp after a feeding; her father called EMS, and she was transported to the hospital via ambulance. She was discharged a few hours later with a diagnosis of “spitting up infant”. The projectile vomiting continued the next day, resulting in a 2nd trip to the same ED. She was discharged again after a few hours; the diagnosis was GERD. The morning of November 4 brought more projectile vomiting; a second episode of going limp, and Rylee stopped breathing and became nonresponsive. Her frantic father again called 911, and Rylee was transported again to the same hospital. This time, however, the hospital determined she needed a higher level of care than they were able to provide, so she was transported, via ground ambulance, to CHKD. Her anxious parents waited to find out what was happening to their baby girl and were horrified to be told an MRI had revealed bleeding around her brain. She was admitted to the PICU, and the nightmare continued as her parents at her bedside watched her condition worsen. She began having seizures; monitors were placed, IVs were started, and she was given loading doses of antiseizure medications. Over the next several days, additional CT scans revealed no improvement in the amount of blood and fluid that was compressing her brain. The neurosurgeon advised brain surgery...drilling ‘burr holes’ in her skull to remove the collected blood and fluid, with the expectation her brain would quickly expand from its compressed state. The surgery was performed on 11/16. The blood and fluid was successfully drained; however, over the course of the next several days, more CT scans made it evident her brain was not expanding as anticipated, and more fluid/blood has continue to collect.
Despite everything Rylee has been up against, she has continued to improve, taking it day by day, doctors’ appointment after doctors’ appointment, and appears to be meeting her developmental milestones. However, that brings us to where we are today. The CHKD investigative team has declined to consider what caused Rylee to become so ill. They have reached their conclusion solely on her symptoms, with no thought being given to an underlying genetic or medical cause, and their conclusion has knocked the ground from under this already faltering family. The medical team’s sole focus is on Andrew, Rylee’s father. Our fear is that Rylee will never be accurately diagnosed and treated; that a family will be torn apart; and that an innocent man’s life will forever be ruined...all because the medical community refuses to exhaust their efforts in the right form, which would be finding out what is happening inside Rylee Grace.
Please hear our story. This isn’t just Rylee’s story...it is also her parents’ story. Three lives have already been affected by this horrific experience. Any assistance will provide this family the ability for much needed help from medical experts towards research and testing, medical doctors, for outstanding medical bills, and so much more.
We have no words other than Thank You and have the utmost respect for all of those that have and will see us through this.