Xander was diagnosed with MSUD at 4 days of life. We were in a hospital that did not know how to treat, was not prepared to treat, and mistreated the disease. At 11 days of life, the geneticist finally reached
Read moreMaple syrup urine disease
Maple syrup urine disease (MSUD) is an inherited disorder in which the body is unable to process certain protein building blocks (amino acids) properly. The condition gets its name from the distinctive sweet odor of affected infants’ urine. It is also characterized by poor feeding, vomiting, lack of energy (lethargy), abnormal movements, and delayed development. If untreated, maple syrup urine disease can lead to seizures, coma, and death.
Evan, Age 8
I am aware that we are some of the lucky ones in that we have great medical coverage via TRICARE. Others should be afforded the same opportunity for coverage
Read moreNia, Age 3
Insurance covers my daughters medical formula but doesn’t cover her medical foods. If my daughters medical foods were covered it would help us out tremendously! Insurance believes it is not a necessity to cover medical food. Medical food is a
Read moreHailey, Age 17
My insurance pays for amino acid modified formula but will not provide any coverage for low protein foods. Low protein food is very expensive. Sometimes my daughter has to go without foods she needs because we simply can’t afford it.
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Indigo, Age 5
It scares me to think about our daughter not having access to her medical formula. This isn’t an option for her, her life depends upon it and cost shouldn’t be a barrier for her or anyone living with a metabolic
Read moreCarter, Age 5
Our family has been fortunate enough to have very good insurance coverage through an employer which provides 90% coverage for medical foods. Out insurance covers 90% of medical foods however we have to get the providers approved by the insurance
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