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Jordann C. | California | Patient Age: 9 | Disorder: MSUD

My 9-year-old son, Carter, loves his Ketonex-2. He is a very active kid and routinely asks for extra batches of his metabolic formula. Since we learned of the Abbott plan shut down, we’ve had to ration his formula. We aren’t giving him extra batches so we can make our supply last as long as possible. We’ve tried several alternatives and all I can get him to drink is a couple of sips. Carter is doing really well managing his MSUD by diet. This success is attributed to his love of him formula. We know other families struggle with metabolic formula consumption, so we feel so fortunate to not have that challenge

As a family we are concerned what will happen when we run out of Ketonex-2. I don’t know how well we can keep his leucine levels in check should we run out of formula. Leucine levels can spike quickly which can lead to neurological damage. MSUD can have severe and sometimes fatal consequences should leucine levels spike. I am fearful my child’s life will be at risk if this Abbott/FDA situation isn’t resolved quickly. Having to balance my emotions on this issue while also maintaining my composure in front of my child is exhausting. I don’t want to worry him, but I want him to be aware of what might happen. Our kids already go through so much mentally & emotionally with their invisible disease, I hate having this wear on him as well.”