Grant’s Story For 3-year-old Grant Reese, it all started with chronic urticaria—red, itchy bumps all over his tiny body. Doctors believed he had an allergy, and for the next six months, he underwent a battery of tests. Meanwhile, the small boy complained of fatigue, that his legs were heavy and “wouldn’t walk”— so much so that he would often fall and have to crawl to the nearest furniture to pull himself up. That time, mom Donnell recalls, seemed to stand still while waiting for a diagnosis for her young son. But once she was referred to the Children’s Hospital of Georgia in September of 2014, things started moving quickly. Grant first saw Dr. Rita Jerath in rheumatology. Jerath consulted pediatric neurologist Dr. Elizabeth Sekul (Augusta University Neuroscience Center) on the case. During intense testing, Grant underwent a lumbar puncture, muscle biopsy, EMG and a four-and-a-half-hour MRI that scanned everything from his brain down his lumbar spine and into one thigh. The results were conclusive: Grant was diagnosed with chronic inflammatory demyelinating polyneuropathy (CIDP). There are currently only 90 known cases worldwide of this rare disease that affects children and adults. Grant is the 10th patient with CIDP that Sekul has treated in her 22-year career. “I know people in our online support group who drive hours to see a neurologist who is just learning about the disease,” said Donnell. “The fact that we have neurologists experienced in this disease right here in our own backyard is such a blessing.” Now 5, Grant is thriving with a maintenance plan of physical and occupational therapy, custom leg braces to strengthen his quads and prevent him from walking on his toes, plus intravenous immunoglobulin infusions every three weeks. “He calls it his ‘run fast’ medicine,” said Grant’s mom, and her son is certainly running fast, riding a bike without training wheels and playing golf. It might take years, but the hope is that Grant will go into remission. In the meantime, “I’m so thankful for the doctors here,” said Donnell. “It means the world to have someone fight for your child.”
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