My name is Ellen and Julia is my 15 months old daughter. Julia was diagnosed with Spinal Muscular Atrophy.
Spinal Muscular Atrophy (SMA) is a genetic disease that causes weakness and muscle atrophy. Type 1 SMA progresses rapidly, with the weakening of muscles leading to frequent respiratory infections and usually death by the age of 2.
Zolgensma is the only available gene therapy that prevents further motor neuron and muscle degeneration by replacing the defective or missing gene (SMN1) that causes SMA. It is a single infusion therapy that costs USD$ 2.1 million.
This one-time medicine could save her life but unfortunately, we can not afford it.
We have less than 9 months to raise the money.
Please help me to save my daughter’s life by donating to our campaign and sharing it with your friends and family.
To know more about me, my family and the campaign please go on Instagram @ame_julinha.
To know more about SMA visit: https://www.mda.org/disease/spinal-muscular-atrophy
- Ana Cristina Azevedo
- Graziela Rodrigues
- Mateus Dalci
- Gudmundur Magnason
Organizer and beneficiary
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