Hi - I'm Lori. My granddaughter Savannah’s story started early - before she was even one day old. I was watching her sleeping on her mom’s hospital bed, and she just stopped breathing. I frantically ran into the hall and called for help – and as soon as the nurse picked up the little 8lb bundle, she started breathing again. Just a newborn getting used to being in the outside world, right? But nursing was a problem from the start, and there were a lot of swallowing and choking issues. Finally, at 7 months of age, after extensive testing, we had a diagnosis – a somewhat rare condition called a Chiari Malformation. My granddaughter had what the Chiari community has nicknamed “too much brain to contain;” a part of her brain (the cerebellum) was bulging through the opening where the skull joins the spinal canal. Pressure on parts of the brain and spinal cord was blocking the flow of essential cerebrospinal fluid. Savannah's second cranial decompression surgery at age 19 months resulted in a severe post-operative infection in her brain and a heart-wrenching 43-day stretch in the Pediatric ICU, with our baby girl hovering on the edge of death. Thanks to an incredibly dedicated neurosurgical resident who spent every spare minute searching worldwide medical databases for answers, our precious baby girl survived. Unfortunately, the result of this prolonged infection was permanent hydrocephalus, causing her to produce excess cerebrospinal fluid - the fluid that surrounds and cushions the brain and spinal cord. Over time, the fluid accumulated within the spinal cord itself, causing a condition called syringomyelia – where pockets of fluid called a syrinx were formed. These pockets required the placement of shunts in her brain and spinal cord to release the excess fluid and pressure. So what is it like to have Chiari, Syringomyelia, and Hydrocephalus together? Extreme nerve pain and spasms, numbness, dizziness, balance issues, scoliosis, compromised function in arms, hands, and fingers, and much more have all been part of Savannah’s life. 3 times in her first 4 years, she had to relearn how to hold her head up, sit up, stand, walk, and talk after emergency surgical interventions and infections damaged her nervous system. With 33+ brain and spinal-related surgeries over her brief 14 years, Savannah has spent a good part of her life in hospitals and emergency rooms (with her mom Autumn at her side almost constantly). The toll on the entire family, both emotionally and physically, has been enormous. The financial toll has been equally enormous. A cost of close to $2 million in medical expenses (much of which was covered by insurance, but with the copays and out-of-pocket expenses still totaling a substantial amount) has left her family struggling to keep up. And it’s not over by any means. Savannah will continue to spend time in the hospital on a regular basis for shunt replacements and various other medical interventions for the rest of her life. So when my dear friend, Paul Teerlinck wrote a song dedicated to Savannah and offered to dedicate his new “Savannah” CD to helping spread the word about a Go-Fund-Me campaign for her ongoing medical expenses, I was thrilled and so grateful! Savannah is a kind of miracle. At 14, she continues to surprise the medical professionals who never would have imagined her ability to rise above her health challenges the way she has. This extremely bright, talented, funny, creative, compassionate, and kind teenager is an A student in 8th grade, despite missing large chunks of school for surgeries and recovery time. Choir, Student Council, Knowledge Bowl, and other extracurricular activities are all part of her middle school experience. As I am writing this, she is in the final rehearsals for “Seussical the Musical” at the local High School. This beautiful being deals with daily challenges that most of us could not imagine, but she rarely complains about her health. She speaks her mind when required, and proudly displays dramatic surgical scars on the back of her head and neck by wearing her thick curly red hair in a high ponytail and having the back of her head shaved closely. She is not ashamed of her scars – she is proud of who she is and what she has survived! There is no way to know what the future will bring for Savannah. All we know is that there will be ongoing major medical expenses. So please, if you are willing and able, give what you can to help. I can guarantee that the money will be used appropriately, and after taking care of current bills, will be saved for Savannah’s future needs. Thank you so much for reading and for giving whatever you can. I am one grateful “Mawney” to have the privilege of knowing and loving my precious Savannah Angel – my “Angel Girl!”
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