Colin was diagnosed with 22q11.2 Deletion Syndrome, or DiGeorge Syndrome, at seven days old. Because of this chromosomal deletion, Colin also has a long list of additional complicated medical conditions. One of these life threatening conditions is a rare Congenital Heart Defect; Truncus Arteriosus. Colin was born with a single artery (or truncus) to deliver blood to the heart and body whereas a healthy heart has an aorta and pulmonary artery. Because of this critical defect Colin was forced to receive his first open heart surgery at only 8 days old to place an artificial conduit from his right ventricle to his pulmonary artery. Now Colin is faced with a rare complication of his defect where his truncal valve (which serves as his aortic valve) has begun to severely leak. In order to fix Colin’s heart, he needs another open heart surgery to repair his truncal valve and to replace his original conduit that is beginning to narrow.
Colin’s parents (Pete and Maria (Montana) Wishnok) are now faced with preparing for his surgery, planned for April. Time is of the essence because without this surgery soon Colin will most certainly go into heart failure. At home, Colin’s mother and father have to monitor oxygen levels, take preventative measures to assure Colin does not aspirate and continue treatment for other DiGeorge Syndrome complications. Colin is currently seeing 15 specialists and six therapists, his mother had to resign from her job just to make sure Colin receives the care he needs to survive.
The doctors and specialists at Children’s Hospital of Pittsburgh have been wonderful and attentive to Colin however, this next surgery is not offered at CHP. Colin and his parents will be traveling to Children’s Hospital of Boston. The Department of Cardiology at Boston has acknowledged Colin’s worsening condition and agree he is a perfect candidate for their world-renowned Truncal Valve Repair surgery. Colin’s family want to make sure to give him the best medical care available, and for Colin’s condition, Boston is the best. Unfortunately, this life saving-procedure will undoubtedly cause a financial burden on the family. Not only do traveling and hospital expenses add up but Colin’s father will be off of work for an unknown amount of time. In addition, because the surgery will take place out of state any medical expenses outside of their standard insurance will not be covered.
No parent should ever have to make a medical decision based on finances. Any donated funds will go to help Colin's family pay for the surgery and also help cover traveling expences.
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