Matthew, 49 years old
MMA Cbl A
Hi! My name is Matthew, I was born in Tucson, Arizona on February 3, 1971. My development was fairly normal. According to my Mom, I met developmental milestones on time, talked early at 9 months but walked late 17 months. During my infancy when baby food meat was introduced I would vomit, this was an early sign that something was amiss. My pediatrician was not too worried and said just cut out meat, which they did. When I was 10 months old, my Mom went into my room to get me up and I was laying in my crib panting like a dog. We were sent to the hospital by the time we arrived I was in a coma, which lasted about 7 days. At the time none of the doctors knew what was wrong. The University of Arizona hospital was just opening and had a genetic/metabolic specialist, Dr. Grant Morrow, who after several months of testing diagnosed CblA. During that time all I was Allowed to have was sugar water. Following my diagnosis, I was on a very low protein diet, I remember going to McDonalds when I was little and my Mom ordering me a hamburger and just taking the meat out or pizza and taking the cheese off. I had injections of hydroxocobalamin every day and then once week. Dr. Morrow followed me until he left Tucson when I was 6. Then my pediatrician took care of me, as there were no metabolic specialists in Arizona (until I was an adult). No metabolic crises, if I did get sick with the flu or other virus, we did daily injections and more hydration. I had a relatively normal childhood, starting playing tennis when I was 6 or 7, did Little League and golf, even wrestled in high school. I was always thin so I was teased a lot growing up, I am still on the lean side. I had some learning challenges, especially with math. I was diagnosed with Attention Deficit Hyperactivity Disorder when I was around 12 and used medication, which was and is so helpful, I continue to take medication today. I attended the University of Arizona and received both an undergraduate and Master’s Degree and I began my career in teaching and coaching high school golf and softball. I met and married my wife Kathy, we have two beautiful daughters, one a student at the U of A and one soon to be 12. My 12-year-old was screened for all metabolic disorders when she was born, thank God, she had none! After about 10 years I returned to school and got a Masters in Educational Administration, since, I have worked as a Vice Principal and Assistant Director of Exceptional Education for a district here in a Tucson, 71 schools. It is a challenge but very rewarding! As an adult, I eat pretty much a low protein, vegetarian diet, an occasional bit of Mexican food, I work out with weights almost every day and play golf once or twice a week. Two years ago, I was evaluated at NIH, what an experience! Doctors are very thorough, there was some concern about my kidney function, otherwise pretty healthy, it was recommended that I do injections once a day and continue with my diet. I now have a genetic/metabolic specialist at Phoenix Children’s Hospital, who I see one a year. My Primary Care I began seeing when I was 16 so he has walked the road with me. All in All, despite my challenges, I am so grateful for the care I had and am receiving, the opportunities and the understanding and support of my family. God bless you all!
From the Fall 2020 OAA Newsletter