When Sammie was born, we noticed a few things that were “different”, but were not necessarily alarming. His head was noticeably larger, and his muscle tone was lower than what seemed to be normal. Holding him was like holding a rag doll, even at 4 – 6 months. By this time, we began to suspect something else was going on and we were missing it.
At 10 months, Sammie became ill and was diagnosed with Hydrocephalus or “water around the brain”. During that time, it was also discovered that he had a Tethered Cord, a rare neurological condition within the spinal column. So, at 15 months, Sammie had surgery to correct this malformation.
Our neurologist began to draw more conclusions between his low muscle tone and what we began noticing as “hyper-flexibility”. Our neurologist recommended genetic testing for a more in-depth study of Sammie’s condition.
In February of 2018, DNA testing showed Sammie had a rare combination of both Ehlers Danlos and Osteogenesis Imperfecta. Ehlers Danlos affects the connective tissue that supports our skin, bones, blood vessels, along with all other organs and tissue. The defects can be mild to severe “hyper-mobile flexibility” resulting in joints easily dislocating. Early onset of arthritis and a multitude of other complications are also related to Ehlers Danlos. Sammie describes it as being a “stretchy super-hero”.
While DNA testing showed that Sammie had Osteogenesis Imperfecta, a disorder characterized by bones that can easily break, Sammie was diagnosed with only a mild form of this disorder.
As with many disorders, we learn as we go while Sammie will continue to follow up with multiple doctors who specialize in his specific areas of need. He will be required to follow routine checkups, as well as continual MRIs to monitor fluid around the brain.
This is all still new to us and we are learning and experiencing new things all the time. As we get older and experience life, we all become more aware of our limitations. Sam, however, at this point, is a five-year-old “stretchy super-hero” allowing nothing to hold him back. Sam is a fun, sweet spirited introvert with a witty personality and loves Jesus with all his heart. Sam attends Piedmont Primary and is in Mrs. Kari Gold’s class.
Taylor Popham has been a 7th grade Geography teacher at the Middle School of Piedmont for the past five years. After noticing a lump on his neck over the summer, he decided to get it checked out. On November 2nd, after an excisional and bone marrow biopsy, he received the official diagnosis of Classical Hodgkin’s Lymphoma, a cancer that affects the lymphatic system and is most common in adults aged 18-33.
He has undergone three rounds of chemotherapy and will complete his fourth and final round in March. Upon completion, he will also need to complete several rounds of radiation therapy to eliminate any remaining cancer cells.