As some of you may know, our younger son, Myles, has Phenylketonuria (PKU). This a rare genetic, metabolic disorder effecting approximately 1 in 14,000 people born in the United States. One of my goals in taking part in this 5K event is to raise awareness for PKU. It is actually pretty amazing; every child born in the United States is tested for PKU the day they are born (newborn screening via the heel prick), yet so few people even know PKU exists.
If not treated, PKU leads to severe neurological complications (including dramatic IQ drops, intellectual disability, memory loss and seizures), and even when treated often leads to learning disabilities, depression, anxiety (which Myles battles on a daily basis) and other developmental challenges. Treatment includes a low protein diet (in other words, no meat, no fish, no beans, no nuts, no soy, minimal dairy, even minimal bread), as well as daily formula intake, constant monitoring of PHE levels in blood through routine blood draws, medical supplements, etc. Our hope is to raise awareness... and to raise funds. Money raised supports PKU organizations at a local and national level as well as ground breaking PKU reserach to help one day find a cure or "PHREEDOM" from PKU!
Any support you can give would be greatly appreciated!
