DeKALB – Between multiple hospital visits and phone calls from school officials, raising 6-year-old Jordan Ervin has been a daily struggle for DeKalb mother Seville Spearman and stepfather Charles Spearman.
Jordan was not breathing when he was born June 13, 2008. A feeding tube had to be inserted after his birth because food was going down his trachea instead of his esophagus. He has also had issues with speech, development, muscle tone, asthma and attention deficit hyperactivity disorder.
It wasn’t until June 2013 when his parents received a diagnosis: Williams syndrome, a genetic condition that affects 1 in 10,000 people worldwide, according to the Williams Syndrome Association. Children born with Williams syndrome are missing between 26 and 28 genes on their seventh chromosome, thereby affecting many different organs over the course of their lives, according to the association.
Jordan’s most recent trouble is with his heart. He is scheduled to undergo open-heart surgery Dec. 8 at Lucile Packard Children’s Hospital in Palo Alto, California, but his family is asking for help in raising $6,000 for airfare and hotel costs.
People can donate at www.gofundme.com/Jordansheart.
“We can’t do it by ourselves. This will save Jordan’s life,” Charles Spearman said. “Why should people help? Because if you don’t, we won’t have our son in six years.”
Jordan’s heart is currently beating three times harder than it should, which is increasing the size of his heart, his parents said. The surgery, which the family expects Medicaid to cover entirely, would correct his six narrowed pulmonary arteries, thereby decreasing the pressure on his heart, Charles Spearman said.
The family needs to travel to California to see Dr. Frank Hanley, who has extensive experience in conducting bilateral surgical pulmonary artery rehabilitation, the surgery Jordan needs. A Chicago doctor who trained with Hanley told the Spearmans that Hanley is the only doctor who could perform the surgery.
Jordan s the second oldest of four children, and the only boy. Charles Spearman works full-time as a case manager for Children’s Home + Aid in Rockford, while Seville Spearman works about 20 hours a week at a paid internship with Northern Illinois University’s Department of Communiversity Initiatives.
Both parents are also pursuing master’s degrees at NIU. They considered paying for transportation and hotel costs using their student loan refunds, but realized it would not cover the full cost.
“We live paycheck to paycheck,” Charles Spearman said.
His parents said Jordan is an independent boy who enjoys getting himself dressed and making his own breakfast. One day, he went to school with shoes on the wrong feet and his pants on backward with no underwear, Seville Spearman said, which prompted a phone call from school officials at Tyler Elementary School in DeKalb.
Charles and Seville Spearman haven’t told their son about his medical condition, nor does Jordan know he is scheduled to have surgery in December. That may be for the best since Jordan does not forget about anything, his mother said.
“He’s still asking me for a doughnut I said he could have three days ago,” Seville Spearman said. “Once he’s doing something, it’s hard to transition him to something else.”
Shortly after she said that, Jordan put down his toys and asked for a doughnut, but the Spearmans did not have any doughnuts in their house Thursday.
How to help
To help the Spearman family raise $6,000 to pay for transportation and hotel costs for 6-year-old Jordan Ervin’s heart surgery in California, visit www.gofundme.com/Jordansheart.