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Grace's Medical Fund

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A little over two years ago, I made the decision to start graduate school, even after finding out I was pregnant. Little did I know, my daughter Grace would be coming into this world two months premature. Watching my daughter fight for her life while trying to maintain professional, financial, and emotional stability was a life changing experience that I have learned and grown so much from. Her story is pretty intense, so I’ll try to be as concise as I can.

Because of her early arrival and her Extremely Low Birth Weight (ELBW), Grace has complex medical and developmental issues. She has been diagnosed with an Airway Obstruction, Congenital Heart Disease, Chronic Lung Failure, an Anoxic Brain Injury (which severely impaired her vision, physical mobility, and cognitive functioning) Epilepsy, and a number of other chronic and accute, unexpected conditions. These diagnoses have required her to 1) undergo numerous surgeries, 2) remain in the hospital for the entire first year of her life, and 3) maintain a number of scheduled medications and doctor visits that she needs to maintain stable health. She also has severe developmental delays and receives speech therapy, occupational therapy, physical therapy and vision therapy.

Starting in the NICU, (Neonatal Intensive Care Unit) we learned about Grace's heart disease, and airway obstruction, and after 4 months of intense medical treatment, we were finally able to go home. Unfortunately, the worst had yet to occur, and Grace’s airway obstruction caused her to experience a period of apnea, (temporary cessation of breathing) leading to her anoxic brain injury. From there, we returned to the PICU, (Pediatric Intensive Care Unit) for another 7 months. Grace may never return to being the talking giggly and bubbly baby that she once was, but merely having her alive provides me with enough motivation to continue my educational aspirations, and strive to make a difference in the lives of people who have experienced similar emotional distress.

After spending so much time in and out of hospitals and doctors’ offices, struggling with acceptance, and learning to cope with all of the emotions and adversities that have come with my daughter’s medical complexity, I am proud to say that I am still an innately positive person. Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A challenge for the obvious reasons, and a blessing because you don’t know the depths of victory, joy and inspiration until you see your child overcoming some of those challenges. 

While we have finally reached a point of stability, Grace’s days of medical fragility are not quite over. We are currently on a waiting list for her open heart surgery to repair her AVSD (Atrioventricular Septal Defect). This surgery is extremely high risk for Grace, and we will need all of the prayers and support we can get. In addition to the recurring medical bills that we have accumulated, long term hospital stays require a significant amount of emotional and financial stability for families with medically complex children. No contribution is too large or too small and would be considered a blessing and greatly appreciated.

Organizer

Taylor Williams
Organizer
Pearland, TX

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