Similar to his older sister Carrie, Connor’s symptoms were misdiagnosed by multiple physicians until he was nine years old. At only a few months of age, Connor was diagnosed with asthma. He has suffered from low blood sugar since the age of four. Connor’s parents noticed from a very young age that he was able to hyperextend his fingers, arms and legs much more than normal. He has also experienced relentless headaches and what his parents initially thought were severe “growing pains,” until his pain became so intense that he was unable to sleep or even walk at times. Each time Connor comes down with a cold or the flu, it takes him an unusually long time to recover. Additionally, Connor has always suffered from extreme and at times, unrelenting fatigue, exercise intolerance and heat intolerance. His parents worried when he was unable to keep up with other children’s endurance during sports or even normal school days. Connor’s legs and feet simply go numb while playing sports or running, and he experiences severe muscle spasms throughout his body after even moderate exercise. Connor was also diagnosed with migraines by a neurologist at the age of seven.
After numerous visits to various pediatricians, orthopedists, neurologists, and after undergoing extensive medical testing to find the source of his crippling pain, Connor was still not improving after various treatments/recommendations. In fact, his symptoms began occurring more frequently and his condition worsened. Finally, a new neurologist referred him to Dr. Richard Boles at CHLA, who diagnosed Connor with Reflex Sympathetic Pain Dystrophy (also called Complex Regional Pain Syndrome) stemming from Mitochondrial Disease, which is responsible for the majority of Connor’s symptoms.
To prevent hypoglycemic episodes or “crashing” (nausea, vomiting, migraine, lethargy, cramps and generalized pain) Connor must eat high protein snacks every 1-1 ½ hours throughout each day and take his medications consistently. He must use a computer at school for all writing assignments to prevent his hands and arms from going completely numb and becoming painful and useless. Connor is unable to participate in P.E.., team sports or even running at times as his legs will become numb and extremely painful. He participates in physical therapy regularly. Connor requires a duplicate set of textbooks at home and in the classroom in order to prevent severe muscle spasms from developing as a result of carrying too much weight. Even carrying one extra book can cause him debilitating pain and fatigue. Over the years, Connor has missed numerous school days, and he has been unable to participate in many extracurricular activities that most kids his age are able to enjoy on a daily basis.
By looking at him, one would never know that Connor suffers from a chronic and painful disease. Connor is a social, assertive, diligent young man who maintains a happy and upbeat attitude. To stay involved, Connor has consistently served on Student Council at school, and has initiated fundraising events in order to promote awareness and education about Mitochondrial Disease among his fellow students and in his community. He is also very involved in philanthropy and community service for various other charities. Connor tries to enjoy life to the fullest, despite his many physical challenges, and he serves as an inspiration to all who know him.