Like many 12-year-old boys, John Hope has dreams of growing up and following in the footsteps of his father. With the will and determination of a survivor, he plans to make those dreams come true.
John has been diagnosed with a rare immune disorder, hypogammaglobulinemia, which causes him to be highly susceptible to common colds and infections.
When Johnny and Sabrina Hope found out they were expecting twins, they were truly excited about the opportunity to be parents, to not one, but two newborns. In May 2005, John and twin sister Johnna Claire were born. They were slightly premature, but overall healthy enough to be sent home soon after they were born.
According to Sabrina, as John and his sister began to grow, Johnna Claire was overall fairly healthy, but John would easily catch colds, sinus infections and fevers. Despite doctors telling her that the sickness was just normal childhood illnesses, Sabrina says she knew something else was going on with her son.
“The most important job I ever had was saving my child’s life,” she shared.
Before he was five years old, John had undergone multiple surgeries, including the removal of his adenoids and tonsils, insertion of tubes and even hip surgery.
Through a mutual friend, the Hopes were introduced to Dr. Philip Roehrs, then the pediatric hematology/oncology physician at UNC Hospital in Chapel Hill. Roehrs ordered testing and blood work to be done on John and that is when the immune disorder was discovered.
“Under normal circumstances, the human body produces antibodies that enables us to fight diseases,” Roehrs explained. “In John’s case, his body does not produce enough of the disease-fighting antibodies to protect him.”
Unlike most people, John’s immune system doesn’t fight off the common colds that are spread every day in every location. Because of the low to non-functioning immune system, his mother says she and her husband have to be careful about allowing the young boy to go a lot of places and be around a lot of people.
“I have been accused of being a recluse, but that simply isn’t true,” Sabrina attested. “It’s my responsibility to keep John as healthy as possible. In the normal world, we have to be careful.”
Once a week, John receives an infusion, which is done at home. Every three months, John must travel to Chapel Hill to receive additional treatments. In between that time, the young man has other doctors he must see for neurology appointments, hearing screenings, physical therapy and pulmonary problems.
“We have spent a lot of time going from doctor to doctor, sometimes on the same day in a different town, getting John the treatment he needs,” his mother pointed out.
Just recently, John had an ear infection that lasted a full year. In the last month, he has been on eight different antibiotics to fight that health issue.
“He is more susceptible to your common cold,” Sabrina shared.
The twins are home schooled. This, their mother explained, keeps unnecessary germs away and allows John to receive the proper care and treatment he needs. Because of the immune disorder, the youngster also suffers from chronic fatigue. Being at home allows him to work at his own pace and take breaks as often as needed.
The Hopes do a lot of their learning through travel, which is something that John truly enjoys. And, just like any other kid, he has animals to occupy some of his time. In his case, John has four cats, but one that holds a special place in his heart.
“His name is Clemson,” John said. “Dr. Philip said I could keep him, as long as I named him Clemson.”
When he isn’t receiving treatments or traveling back and forth between doctor’s appointments, John loves to go to the beach, ride four-wheelers and horses, and work on the farm with his daddy. Both John and Johnna Claire enjoy playing the piano and taking voice lessons.
“He like to do everything any other little boy would want to do,” Sabrina said. “He is just your normal boy that tires easily and you have to be careful around.”
Sabrina says that John will continue to receive treatments for the rest of his life. The only known cure is a bone marrow transplant, but that is the last option physician’s try.
The Hopes have received a great deal of support through the Luka the Lion Foundation and the Jeffrey Modell Foundation. Little is known about certain immune disorders, and through the foundations and spreading the word, Sabrina hopes to raise awareness for all rare childhood illnesses.
“Behind every cloud, there is a silver lining,” she attested.
Reach Kristy D. Carter at 910-592-8137, ext. 2588. follow us on Twitter at @SampsonInd. Like us on Facebook.