Catonsville Mom organizes 5K Run to benefit Maryland Alliance of PKU Families

Catonsville resident Teresa Smith has a very common last name. Her two-year-old son, Max, however, has PKU - a very uncommon disorder - for which she’s organized a 5K race.

 The Maryland Alliance for PKU Families (MAPKUF), Inc. for PKU 5K Run will take place on Saturday, March 22 at the Banneker Historical Park, 300 Oella Avenue in Catonsville, MD. Rain or shine, it’s the first 5K race to be held in Maryland to raise awareness of the genetic disorder Phenylketonuria (PKU) and to support the individuals living with the disease and those that care for them.

 Affecting about one out of 10,000 to 20,000 babies born in the United States each year, classic PKU (phenylketonuria) is a rare, inherited metabolic disease characterized by the body’s inability to utilize the essential amino acid, phenylalanine (Phe). Excess PHE is toxic to the Central Nervous System and could result in mental retardation and other neurological problems when treatment is not started within the first few weeks of life.

 Some moms might recognize PKU as the heel-prick test performed on their newborns in the hospital. While at home recovering from a difficult delivery, Teresa Smith got a phone call when Max was 10 days old that she and her husband needed to get him to the hospital right away.

 “Max was diagnosed with classic PKU. A person who does not have PKU has a normal blood PHE level of about 22 or somewhere within that range, Max's level was 1800,” Smith said. She had to immediately stop breastfeeding Max for a week so that the prescribed PKU formula could get his numbers back under control. After the week, Smith had difficulty getting back into the routine and stopped nursing altogether a few weeks later.

 Today Max avoids high protein foods such as meat, fish, poultry, eggs, cheese, milk, dried beans, etc. Smith needs to carefully weigh, measure and log everything Max eats. “While he has to be on a low protein or PHE-restricted diet, I also have to make sure he has enough natural PHE to grow and develop normally. His prescribed PKU formula has synthetic protein in it and is also, at this point in his life, his main source of calories.  Other than that he eats fruits, vegetables and low protein medical foods, which are very costly,” Smith said. 

 A MAPKUF board member, Smith is anxious to spread the word about the disorder and necessary dietary restrictions as Max gets closer to school age. “Every time I fill out an information card for the gym about Max’s disorder, people look at me with a blank stare,” she said.

 To register for the MAPKUF, Inc. for PKU 5K Run, visit http://www.active.com/catonsville-md/running/races/mapkuf-inc-5k-for-pku-2014

 Rain or shine, race start time is 8:30 a.m. Pick up packets at 7:30 a.m. Advance registration: $25.

 For more information about PKU, visit http://www.npkua.org/Education/AboutPKU.aspx