Elliott was diagnosed with Homocystinuria, or HCU, at 2 years old after suffering a series of blood clots throughout the brain. Once diagnosed, we immediately began treatment, which consists of a very low protein diet, medical formulas, Vitamins B6, B12
Read moreHomocystinuria
Homocystinuria is an inherited disorder in which the body is unable to process certain building blocks of proteins (amino acids) properly. The most common form of homocystinuria is characterized by nearsightedness (myopia), dislocation of the lens at the front of the eye, an increased risk of abnormal blood clotting, and brittle bones that are prone to fracture (osteoporosis) or other skeletal abnormalities. Some affected individuals also have developmental delay and learning problems. Less common forms of homocystinuria can cause intellectual disability, failure to grow and gain weight at the expected rate (failure to thrive), seizures, problems with movement, and a blood disorder called megaloblastic anemia
Grayson, Age 2
Grayson needs to take an injection of a specialty compounded form of B12 called Hydroxocobalamin. Our insurance through my husbands employment and Medicaid do not cover compounded medication. Without this medication he would suffer from seizures, brain atrophy, vision loss,
Read moreLeah, Age 12
We have an excellent private BCBS insurance policy, that we pay monthly for. As great as it is, it will not cover our daughters medical formula. This is a need, that comes accompanied by multiple letters of medical necessity from
Read more
