We are setting up this fundraiser for our beautiful baby girl, Ryleigh.
Ryleigh was born six weeks premature in August of 2011 and spent over two weeks in the NICU before she could come home. As parents we were thrilled to be bringing home our precious miracle. However, we never imagined her premature birth would be the easiest obstacle her little life would encounter. Ryleigh’s first few weeks at home seemed normal and despite her lack of growth we thought everything was alright.
We quickly realized that her lack of weight gain/minimal weight gain was not normal and expressed our concern to her pediatrician. In late fall 2011 Ryleigh was sent to a cardiologist who diagnosed her with an ASD (Atrial Septal Defect) also known as a hole in the heart. We were not overly concerned because a majority of ASD’s close without surgical interference. A couple of months passed and it was January of 2012. Ryleigh became very sick and was hospitalized with RSV (respiratory syncytial virus) and bronchitis. During her hospitalization we meet her Gastroenterologist who ordered an upper GI study. The study revealed Ryleigh had an aberrant right Subclavian artery that had already caused a notch on her esophagus. We were shocked by the finding but that still did not explain why Ryleigh was so small. After a week stay in the hospital we got to bring her home. That is when Ryleigh’s medical situation took a turn for the worst and her story of her fight for survival truly begins.
Before we knew it February 2012 had arrived and Ryleigh still had failure to thrive. The two specialists treating Ryleigh thought she needed immediate care and admitted her to Vanderbilt Hospital. This hospitalization was agonizing because Ryleigh was miserable throughout various procedures. After her weeklong stay we left with further diagnoses, no change in her current medical status, and a heart monitor. The team of doctors at Vanderbilt diagnosed Ryleigh with Laryngomalacia (moderate to severe), apnea, and bradycardia. Little did we know that we would have our hearts broken weeks later when results from a genetic blood test finally came back. The results of the blood test revealed Ryleigh had a Chromosome 7p defect and was the first to be diagnosed with this particular spanning number. We never felt more helpless than that very moment as we sat in the doctor’s office with tears streaming down our faces. Her geneticist could give us very little answers at the time and ordered MRI’s for Ryleigh.
The MRI’s arrived a few weeks later and at this point we thought we had become emotionally stabilized with Ryleigh’s medical condition. We were very wrong. The MRI’s revealed Ryleigh had thinning of the corpus callosum, a tethered spinal cord caused by a fatty tumor, and Syringomyelia (Three fluid filled cysts in her spinal cord). The neurosurgeon explained that based on Ryleigh’s current status that the surgery to correct the spinal issues would do no good because he did not see her quality of life improving therefore we would better serve our efforts by focusing on maintaining her current quality of life. We cannot begin to explain the flood of emotions that overcame us and how difficult the days following were for our family to get through.
Now to get to July 2012, Ryleigh was evaluated by a new geneticist who specializes in craniofacial defects and syndrome identification. The geneticist sent Ryleigh for blood test to confirm his suspicions of Russell Silver Syndrome. The test could take weeks to come back but we are hoping for a firm answer sooner than later. Ryleigh will be eleven months old mid-July and still weighs under eleven pounds and just over 24 inches long. We hope that Ryleigh’s story touches your heart and that you find her cause worthy for your donation. We truly appreciate you reading about our miracle baby girl.
Donations will be used to cover medical cost not covered by insurance and thank you again for your generosity.
The Brannon Family