Connor Sports Gives Back
4 years ago
Nicole and her family joined us in Puerto Vallarta from their home in Mexico City, Mexico, thanks to the generous support of Connors Sports Flooring. Nicole was diagnosed with OTC deficiency, one of the urea cycle disorders (UCD), in 2011 when she was six months old. She was hospitalized in the pediatric intensive care unit for four days and suffered seizures before doctors suspected she had a UCD and obtained blood tests to investigate elevated ammonia causing her symptoms and seizures. Once elevated ammonia was identified, doctors were able to rescue her from what would have otherwise been a fatal situation.
Nicole is now 2 years old. She has been hospitalized over 10 times in the last year for elevated ammonia levels or complications of the gastric tube (G-tube) that allows her mother to administer special formula and medication. Children like Nicole living in Latin and South America do not have access to state of the art medications that work to keep the condition stable, or to the life-saving rescue medication that is administered in acute crisis to lower high ammonia levels quickly. She receives the second-tier medication and her parents have a heavy financial burden trying to obtain the special medical formula needed that is the standard of care in the United States.
Nicole is a beautiful, happy, loving and adventurous child living with a disorder that often causes developmental delays due to the effects of the disorder on her brain function. She is fearless and courageous tolerating frequent hospitalizations and a difficult daily regimen of foul medications and a special low protein diet. Her mother will make a special low protein cake for her upcoming birthday; she cannot have ice cream or regular cake due to the protein content that would cause her body to make excessive ammonia and destabilize her condition. Despite her challenges, Nicole is thriving because of the dedication of her parents and pediatrician, and the information and support her parents and physicians have access to through the National Urea Cycle Disorders Foundation (NUCDF). Nicole’s parents and physicians have access to NUCDF’s medical experts in the United States. Her parents dream of the day, hopefully very soon, when there is a cure for Nicole and other children living with UCD.
Nicole’s parents will forever be grateful and very appreciative of the vacation to Puerto Vallarta to enjoy some much needed family time and rest. The trip is an opportunity that would have never been possible due to the physical, emotional, and financial care of Nicole. They now have memories of their family trip to Puerto Vallarta that will last a lifetime.
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