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Jillian B. | New York | Patient Age: 5 | Disorder: Tyrosinemia Type 1

Our daughter is 5 and drinks Tyrex for her nutrition. This is an essential part of her diet and can’t simply be replaced by a different drink or switched to another medical formula in a quick manner. Children who have relied on this formula since birth have gotten a taste for the particular formula and switching at short notice is just not an option. These children refuse to drink the new formula and it becomes a daily battle for them to get their proper nutrition. If the children do not drink enough of their medical formula it can cause brain damage, developmental delays and physical delays.

My daughter just experienced the pandemic and was largely isolated due to her medical condition. Despite the toll it took on her to be out of school, we wanted to keep her safe not knowing how COVID would impact her Tyrosinemia. She has experienced a lot of changes going back and forth between school, reentering social situations and now she will be beginning kindergarten this fall. We currently still have some Tyrex but our supply is going fast. This is crucial for families of medabolic patients to have their formula manufactured and shipped as soon as possible. Please please please do what you can for these children.