John Paul Jones was born in 1958, when little was known about Primary Immunodeficiency or its effects. He had been sick most of his first seven years of life, suffering from recurrent bouts of infections. Antibiotics did not work. In one year alone, he had pneumonia three times. He contracted bronchiectasis. One of his lungs collapsed under the strain and had to be removed. At the age of seven, John Paul was diagnosed with hypogammaglobulinemia (a Primary Immunodeficiency), which meant that he had no way to fight off infection. In February 1965, the Canadian Junior Red Cross confirmed it would provide John Paul the necessary treatment of Gammaglobulin. He started receiving treatments of intramuscular gammablobulin in each hip. John Paul complained that the big needles hurt.
John Paul would see the doctors weekly. His mother protected him from all activities and especially the outdoors. John Paul couldn’t play hockey, his favourite sport. His mother was overprotective, fearing that her son would get another infection, which meant no outdoor activities, no sleepovers, no camping, and no more of the things that John Paul longed for.
John Paul had only one sibling, Daniel, who was also very sick as a child with repeated infections. Daniel died in 1970, never diagnosed.
As an older teenager, able to speak up against the tight controls his mother enforced, John Paul started playing a little driveway hockey. He also started running, and boy did he run.
As a young adult, there was never a day when he didn’t feel ill. He never felt 100% healthy and he never had a good night’s sleep. He was on and off antibiotics on a regular basis.
John Paul started feeling better the day he started treatment with IVIG (intravenous immunoglobulin, which is injected into the blood stream).
At the age of 45, John Paul turned his attention to his first love, hockey, and joined a team as the goalie. He’s been playing ever since.
John Paul has come to accept the limitations of living with a Primary Immunodeficiency, but he doesn’t let it slow him down. He grew up protected from activity and isn’t wasting any more time just sitting around. John Paul now runs in the Scotiabank Toronto Waterfront Marathon.