Building Hope for TJ: His Journey, Our Fight

TJ is a current kindergartener and a Statesville native who is also a patient at the Children’s Hospital of Philadelphia (CHOP). He was recently diagnosed with a genetic disease called DEGS1, which is a type of Leukodystrophy.

While at CHOP, TJ sees a variety of specialists that help aid in the understanding of this disease. He travels quarterly with his family to receive Botox injections (8) in his legs to help with the tightness and high tone. As a result of the spasticity in his lower limbs, while also being non-weight bearing, his hip sockets haven’t developed correctly. In addition to these recurring appointments, TJ will undergo extensive surgery on June 3 to repair his hip sockets and correctly place his femurs. He will also have tendon lengthening done to help loosen his legs, providing relief and aiding in his comfort. This surgery will require that TJ remain in the hospital for a week, with an additional three weeks in the immediate area for observation and healing. He will be away from his home and big sister Nora during this time. TJ and his parents have rented a home outside of Philadelphia for the month of June, where they will live while he recovers.

TJ's genetic condition is extremely rare. He is the only known person in the world with his exact condition. Fortunately, CHOP has a Leukodystrophy clinic and a prestigious doctor on site that specializes in TJ's disorder. While hospitalized for the surgery, his care team is planning to begin an experimental drug trial that will hopefully help with his prognosis. Fortunately, TJ continues to hit milestones despite his diagnosis of DEGS1, but there are a lot of medical expenses to help him continue to grow and flourish. Any donation made will help the family with travel expenses including lodging, gas, and groceries, as well as medical costs to give TJ the best opportunity and life possible.

For more about TJ’s journey with DEGS1, please follow him on Facebook at, TJ’s Journey Built on Love