Formula for Maren

Maren Winter was born with a rare genetic disease called Propionic Acidemia.  She is the only surviving child between the states of Colorado and Wyoming with her condition.  Her condition is so rare that many doctors have never heard of this disease.  Maren's little body treats the average protein intake like a poison and because of this, Maren must take a life-sustaining metabolic fomula everyday to reach her nutritional needs.  Her condition never goes away.  No one knows why, but simple childhood illnesses trigger her disease.  A cold, an earache, a low grade temperature, lack of calories, dehydration, and even constipation can result in brain damage or death if not monitored closely and rectified quickly.  There are times when these things happen and Maren must be admitted to the hospital for care. The formula is very expensive.  The drugs that are available for her should she need them are experimental and are not covered by insurance.  We do what we can as a family to raise money for research, but we both work full-time and have another child as well, so it is difficult to get that extra time to advocate like we would want.  Getting formula has been very problematic for us.  We have a rather large outstanding bill as it is right now due to an insurance company still attempting to deny that Maren's formula was a necessary component to her survival.  It is so scary at times not knowing if we will have the formula for her or not.  It would mean so much to us to know we won't ever be without this formula for her.