DEKALB, Illinois — Jordan is the only boy in his sibling group of four. His older and younger sisters love and adore him. He loves to play cars and robots, and he likes Spider-Man and puppies. But Jordan is not like most 6-year-olds. Last summer, he was diagnosed with Williams Syndrome, a rare genetic disorder that affects 1 in 10,000 people annually.
One of the many characteristics of Williams Syndrome is congenital heart defect. Although the diagnosis brought much relief to the family to finally understand Jordan’s complications and possible outcomes, another blow was delivered this past May: Jordan’s heart is working three times harder than it should be, which is increasing the size of his heart. This can dramatically shorten his life span, and the only way to fix this is to have surgery.
Good news, right? Sure. However, the only surgeon who can perform the necessary procedure is Dr. Frank Hanley, located in Palo Alto, California, at Stanford University. Dr. Hanley invented this surgery.
Because of medical necessity, Medicaid is covering the medical costs of the surgery on Dec. 8. However, an abundance of other costs need to be covered, such as flight, food, car rental and lodging for this family that will need to be in California for three to four weeks, one week prior to the surgery and three weeks for recovery time after the surgery. Although both Mom and Dad have full-time jobs, both work in not-for-profit agencies, and they don’t have the extra funds needed so Jordan’s family can be there with him during this time. The family has estimated the total cost at $6,000, and has set up a secure donation website for anyone willing to help at www.gofundme.com/jordansheart. In the first five days, $740 was donated. The family would greatly appreciate any other donations, which can be made through the secure website.
From the Aug. 27-Sept. 2, 2014, issue