Genistein for baby Sage

Baby Sage has been diagnosed with GM1 Gangliosidosis classic infantile type 1. Which just so happens to be the most severe type with onset shortly after birth (usually by 6 months of age). Affected infants typically appear normal until onset, but developmental regression (loss of acquired milestones) eventually occurs. Signs and symptoms may include neurodegeneration, seizures, liver and spleen enlargement, coarsening of facial features, skeletal irregularities, joint stiffness, a distended abdomen, muscle weakness, an exaggerated startle response to sound, and problems with gait (manner of walking). About half of individuals with this type develop cherry red spots in the eye. Children may become deaf and blind by one year of age.

There is currently no effective treatment for GM1 Gangliosidosis. There is only symptomatic treatment for the neurological signs and symptoms, but it does not significantly alter the progression of the condition. Our only options for treatment is a bone marrow transplant (if he qualifies), or genistein.

Genistein is a pure concentrated soy. It is in a powder form that we can just put in his formula. It is supposed to help with his cognitive brain functions. The downside is that no insurance will cover it and one of the only pharmacies that distributes it is Fallon pharmacy in New York. It is going to cost us a couple hundred dollars a month for Genistein and is only going to get more expensive the bigger baby Sage gets.

PLEASE help us get this medicine for our baby, he deserves the best life we can possibly give him! Whatever funds we don't use we will donate to Children's hospital and globalgenes.org

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Donations

  • Nicole Norkin 
    • $25 
    • 42 mos
  • Anonymous 
    • $25 
    • 55 mos
  • Anonymous 
    • $10 
    • 56 mos
  • Kelsey Graham 
    • $50 
    • 57 mos
  • Sammie Robertson 
    • $100 
    • 57 mos
See all

Organizer

Haley Flores 
Organizer
Greensburg, PA
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