Remembering Joseph Roberts
University studentís fight with cystic fibrosis inspires friends, family
"I have CF but I don't let it get in my way. After all you only get one chance at life so you better make the best of it!"
Joseph Roberts' Facebook biography is a moving encapsulation of what made his life, which ended Sept. 27 as the result of complications from a double-lung transplant, an inspiration to the friends and family who helped him as his health declined. In an interview, his mother, Donna, described Joseph's bout with cystic fibrosis, which led to him needing the transplant, and his determination to lead a normal life in both athletics and academics.
When he was 13 months old, Joseph, a Midlothian, Va. native, was diagnosed with cystic fibrosis, which is a genetic disease that causes mucus buildup in the lungs and harms the pancreas and the body's ability to process nutrients. According to the Cystic Fibrosis Foundation's website, the disease affects 30,000 children and adults in the United States and about 70,000 worldwide. The average life expectancy for the disease is 37, and for someone diagnosed at a young age like Roberts, "an ongoing battle with medicines" and a daily routine of medication and treatments is necessary to keep the disease at bay, said Linda Vines, executive director of the foundation's Virginia chapter.
Joseph's diagnosis changed many things for his family, but, Donna said, "My husband and I decided we wanted to live as normal a life as possible." The family did its best to help Joseph as they worked around a tight treatment schedule, often using portable nebulizers and IVs, and doing physical therapy at home.
As he grew older, Joseph developed a passion for hockey. During his first trip to the ice rink, Joseph "skated around like he had been doing it forever," his mother said. At 8 years old, Joseph joined the Richmond Royals travel hockey team and mostly played defense until he was 17, when he stopped playing because of his health. He then became an assistant coach for the 9- and 10-year-old squads, which he led to the playoffs.
Joseph's mother recounted how he would bring his hockey equipment to the hospital to make sure that his IV would fit around his equipment. "We just made it such a part of our lives that it became normal," she said. "He had the attitude of, 'I'm going to do what I want to do,' and that's what he did."
The exercise and the cold air were good for his health, as well. Vines said being active is "a big piece" of staying healthy for cystic fibrosis patients and sports are "something that these young kids can engage in that makes them a little more similar to their friends."
Joseph's teammates looked up to him because "they knew what he had to do to be able to play," Donna said. He had to be on a very rigid schedule to fit his treatments in between practices and games, but the joy of hockey made it all worth it to Joseph, and his family and doctors were "more than willing" to make it happen, she said.\nHockey consistently helped Joseph deal with his disease, even at its worst moments. His mother described one incident when Joseph was severely ill with a bacterial infection. As a result, he celebrated his 16th birthday in the hospital, and he received an autographed hockey stick, given to him by a doctor at the hospital who had a friend who played professionally in the National Hockey League. In recognition of the role hockey played in Joseph's life, his former teammates wore their Royals jerseys to his funeral service.
Along with hockey, Joseph was passionate about travel and was granted a request by the Make-a-Wish Foundation when he was 15. Joseph went on a 10-day train trip across the country on the American Orient Express. The foundation flew the family to Los Angeles, where they boarded a train bound for various sites in the United States.
His mother described the trip as utterly "amazing" and "unbelievable," a time for the family, which worked hard to stay abreast with Joseph's treatments, to relax and unwind. During his time on the train, Joseph got to know everyone, Donna said, and loved to play poker with some of the elderly passengers. They all "fell in love" with Joseph and took to calling him "fast Eddie" because he would often rake in all of the chips. The foundation took care of all of Joseph's medications during the trip and often had surprises waiting at the train's stops - signed hockey memorabilia, a box of his favorite Sour Patch Kids or a seafood dinner complete with crab legs, which he particularly loved. It was "10 days of not having to worry about anything and just enjoying ourselves," she said.
When Joseph attended the University, he was again fulfilling a dream. His mother said Joseph "absolutely fell in love" with the University when his family visited to pick his sister up from a dance camp. He was waitlisted when he first applied, though, and spent his freshman year at Virginia Commonwealth University. He then transferred for his second year, living in Bice House and studying biology and pre-pharmacology, even as he continued to receive medical treatments from his doctors at home. Joelle Bankston, a respiratory therapist at VCU, recalled Joseph's determination to go to school, saying that his disease "did not slow him down one bit."
Joseph spent a great deal of time at VCU Health System, which is located close to his home in Midlothian, to undergo treatments.
He battled a bacterial infection in his lungs and was put on the waiting list for a double-lung transplant in January. It was not until Aug. 9 that he received the transplant at the University of North Carolina. He passed away Sept. 27 because of complications from the surgery.
Donna described the VCU doctors, nurses and staff as "pretty much like family." Bankston recalled Joseph's sense of humor and how he would sometimes answer the phone by saying, "Thank you for calling Pizza Hut. Will this be carry out or delivery?" For Joseph, the VCU hospital was a central support community, a place where "he knew everybody and everybody knew him," his mother said.
The support communities surrounding the Roberts family were a crucial part in raising the money for Joseph's lung transplant, which cost about $100,000 after insurance. His hockey team held two benefits, a silent auction and a exhibition game that raised about $19,000 total, she said. Several other fundraising events were listed on the Facebook page, "Friends of Joseph Roberts," including events at Cheeburger Cheeburger and Tropical Smoothie, a Links to a Cure Golf Tournament and a plant sale. His mother explained that fundraising was a key component of Joseph's candidacy for a lung transplant. The family worked with the Children's Organ Transplant Association to organize and plan fundraisers. The organization set up a website for Joseph and sent a representative to Richmond to assist the family.
Roberts' mother said her son was someone who "had that personality where you were just kind of drawn to him." Despite the obstacles he faced in life, Joseph "enjoyed life, and enjoyed everything he did," she said. "He had such a determination to live life. He always had a smile on his face and just kept pushing"