Micah’s PKU Treatment Fund
Micah is an absolutely amazing and wild 3-year-old, anyone who’s ever met him can attest! When he was 5 days old,he was diagnosed with a rare genetic condition called phenylketonuria (PKU). People with PKU lack the ability to break down a single amino acid that is found in protein. Eating the same diet as you and I would lead to a buildup of phenylalanine in the blood and ultimately result in permanent brain damage. Currently there is no cure for PKU, and the only real treatment is what doctors refer to as, “diet for life.” For Micah this means drinking over 30 ounces daily of his amino acid formula while strictly limiting all food input to a max of 4 grams of protein a day. Staying on diet means Micah has never eaten most common foods; meat, milk, eggs, nuts, oats, soy, tofu, dairy, beans, white/wheat bread, pasta, deserts…basically anything over 1g of protean per serving.
Living life with an extremely restricted diet poses some challenges. One of these challenges is Micah’s ability to keep food down. Eating a typical recommended diet while young allows a child to develop tongue and throat muscles as they learn to continually break down more complex foods. For Micah, this has resulted in him throwing up frequently – sometimes as much as 4-6 times a day (think having the flu virus for 3 years). To complicate things further, when he’s unable to keep food down, his body goes into a state of catabolism (meaning his body burns fat/muscle for energy) these fat and muscle tissues are where your body stores protein and when he’s catabolic his body is releasing more protein then he can process…further extenuating the problem.
For those of us who aren’t science minded, this is where it gets easier for us to understand Micah’s situation and how we can help
Micah’s doctor’s at UofM MottsChildren’s Hospital have recommended him for an intensive inpatient behavioral feeding program in Ann Arbor. He will meet daily with a pediatric gastroenterologist, speech-language pathologist, dietitian, and pediatric psychologistwho will work for 8 weeks to retrain his gag reflexes while working with the muscles in his mouth and tongue to properly train him how to eat and chew. The goal of this program will ultimately help him be able to eat and keep down the narrow list of foods he needs to eat to thrive. We’re hopeful that the intense intervention will help to give him the tools he will need to succeed in school and thrive in life.
Here’s how we can help. This treatment program will require a monumental financial as well as logistical effort from Micah’s parents, Kristin and Tim. With two boys in elementary school, life will need to go on with as much normalcy as possible for them as well. Family and close friends have already begun helping with logistics of splitting our family up for 2 months,but the main gap to cover is financial. The goal is for Kristin and Tim to split the time with Micah while he is in the program. As many of you know, Kristin is a contractor with her job and does not have the ability to apply for any type of FMLA or short-term disability to cover her income for the missed hours of work she will incur. Tim has begun the process for the approval of FMLA with his job, but was informed that any time off he needs to take to be with Micah, will also be unpaid. This puts the family at an immediate 50% loss of income for the 8 weeks.
Providing any financial support to the Kopp family during this time would not only help with the loss of income for 8 weeks, but will also help with the additional expenses they will incur such as parking daily at the hospital, gas to and from Ann Arbor for 8 weeks, food for Micah during the program time, and the added cost of having a family spilt between two locations.
Any additional funds would go into Micah’s specialty food fund, helping to give him more options and resources for an unrestricted life forward.
