Paisley just celebrated her 9th birthday. If we were to believe the doctor's prognosis at her birth, this event was not expected, along with her 1st through 9th birthdays. But Paisley, as she often does, continues to surprize and amaze us!
Paisley has Aicardi Syndrome (AS), an extremely rare condition. For comparison, Down Syndrome occurs in 1 of 700 live births, while AS occurs in 1 of 100,000 live births. There are estimated to be 1,000 persons with AS in the USA, and at least 4,000 worldwide. The syndrome only occurs in girls, or very rare cases of a boy with two X chomosomes. AS is considered to be life-limiting, with an expectation of 8-10 years, but there are girls that have lived into their 20's and 30's, and one woman who just turned 45!
As a result of AS, Paisley has seizures daily, extensive developmental delays, severe scoliosis, some vision impairment, and cannot sit or stand on her own. Paisley's needs are extensive and her care is intense and time-consuming. All her medications and food are via her G-tube. This includes three anti-epileptic drugs, twice a day, two other drugs for gastro and sleep issues, and whatever seizure rescue drugs are needed if she is unable to stop seizing on her own. Because of her seizures, Paisley requires 24/7 monitoring. She receives physical, occupational, speech and feeding therapies every week.
But all of the above facts are what she has, they are not who she is! Paisley is a sweet, bright, happy girl that smiles, laughs, cuddles and loves with abandon! She has amazing deep blue eyes that pierce your soul, and a smile that enters your heart for a long stay. She is the epitome of unconditional love given to all, and you feel it in her presence. She is God's amazing creation, and our blessing.
Through caring for Paisley, we have found purpose in this life and thank God for her. But we have also come to understand the intense demands and pressure of caring for a child that is medically fragile and has a limited life expectancy. Through this understanding, and God's prompting, we have created The Paisley Mae Foundation to provide financial and resource assistance to families who are also experiencing these challenges. It takes a team of family, nurses, therapists, doctors, and insurance and service providers to meet the needs of a child like Paisley. And it is exhausting, emotional, frustrating, expensive, glorious and fulfilling...all at once.
The Paisley Mae Foundation exists to give families like ours assistance and understanding as they live a life that is difficult and amazing. "We Have Today" is our motto, because we have found that such a single-minded focus on this day that we have right now strengthens us for the days that follow, without fearing what they may bring. We hope to make each family's "Today" a bit brighter through our assistance.