Kicking Up Support for Patrick

Created 02.7.2019 by Community Benefit Tree

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Patrick Brown at Celebration of Support Fund

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Overview

Patrick Brown 15, is the son of Liam and Raquel has always been an exuberant and athletic child that enjoyed all forms of competition. In January of 2017, we started to notice that he was having significant breathing difficulties while playing soccer,walking up the stairs, and generally anything that required a moderate amount of exertion. He soon developed a cough that would be so persistent that it would occur on and off for 18-20 hours a day.
We finally received a diagnosis July 15th of 2017 where they discovered a right aortic arch and that evening he went to Children’s Hospital in Neenah for an Echocardiogram, and Children’s in Milwaukee for a CT Angiogram where it was confirmed that he had a right aortic arch w/Kommerell diverticulum. Patrick was fortunate to have one of the best heart surgeons’ in the country manage his case and on the 16th of August they corrected his congenital heart anomaly. The corrective heart surgery was necessary to improve his quality of life and his overall health.
During Thanksgiving of 2017, Patrick began to develop severe abdominal pain, nauseating headache, and profuse diaphoresis which was all new for him. Throughout all of 2018 we have worked with his primary physician, Pulmonologist, Gastroenterologist, ENT, Speech therapist, and Cardiologist in attempt to manage his recurrent symptoms that continuously prevent him from living an active life. Patrick’s Gastroenterologist recommended an FDA approved research device called a Neuro Stimulation System (NSS) device that could potentially help with managing his pain, breathing, gastric emptying, and overall day-to-day energy. Patrick had his first NSS device placed on January 2nd of 2019 and he currently gets a new device every 7 days for a total of (4) sessions. Thus far, Patrick has had gradual but
significant improvements in his day-to-day energy, abdominal pain, and it appears that his respiratory function is improving. Currently, the NSS device is currently not covered by insurance and carries a substantial weekly cost, Children’s Hospital of Wisconsin is working hard to reduce the weekly cost of the device for families, who have loved ones who are benefiting from the device and contributing to the
research that will hopefully help future patients and families.

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