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Amy M. | Alabama | Patient Age: 18 | Disorder: PKU

My son is almost done with his senior year of high school and is suddenly finding himself unable to have access to the lifesaving formula he has been on since he was 8 days old. As anyone who’s had a senior recently knows, this is a busy and stressful time. It is a terrible time to find yourself worrying about finding a suitable replacement for this very necessary medical treatment. Thankfully Will is old enough to understand the importance of his medical formula and does his best to choke down samples of other formula options. However, when you’ve taken something every day for your entire life, change is hard. He finally picked a sample he thought he could tolerate daily only to find out that company is struggling to keep up with the increase in demand due to all the people having to switch over. The other issue is that the new formula is significantly more expensive and our insurance does not cover his metabolic formula. All of this has caused a lot of stress and uncertainty for our family. My biggest fear with the timing of this is that Will will just give up. A lot of older teens and adults struggle with staying on treatment due to how difficult is and the lack of access to his formula is making it even more difficult right as he prepares to move off to college and be on his own for the first time. I fear that this will cause him to give up on his formula which would have lasting consequences for his life.