What if your child’s life had a price? What if this price is over 2 Million dollars?
Save Davi Lucas CAMPAIGN
I would like to introduce you to a very special child. His name is Davi Lucas, he lives in Volta Redonda / RJ. This little one is battling a rare disease called AME (spinal muscular atrophy). On behalf of the family and the other volunteers I come to ask you for support on this journey! Together, we are raising donations for Zolgensma Gene Therapy, which costs more than $ 2 million, and is the only drug capable of helping Davi.
Davi fights for living since he was 5 months old- he was diagnosed with: SMA (Spinal Muscular Atrophy) type 1 (the most severe). SMA is a rare genetic disease, characterized by weakness and muscular atrophy, followed by fasciculations severely compromising mobility during an early stag
Please help us save Davi! Help us to allow him to have a dignified life, without pain! Let’s give him the chance to walk, talk, play, go to school, and so on.
What keeps us away from this dream? The cost of this new treatment: US$ 2,1 million (USD), or, R$11 million (BRL) approximately, just the medicine, Zolgensma. Hospitalization costs and exams are still to be priced and expected to be expensive. We don’t have much time left, because the treatment can only be applied to children within 02 years of age, we only have a few months left to raise the funds for the treatment.
On May 24th, 2019 the FDA approved Zolgensma in the US, from AveXis (pharmaceutical company Novartis) that promised better prognosis and improved results, being capable of even stopping the disease because of its different action mechanisms. The new medication, Zolgensma, promotes the genetic material’s transference by a vector (virus), correcting the altered DNA and not by just replacing bases and raising SMN2. By doing that, roughly speaking, a “genetic material transplant” occurs, stopping in a definitive way the disease with only one intravenously dose.
Davi has been taking Spinraza (Nusinersen), with a prescription for 06 doses during the first year of life and 03 more annual doses for the rest of her life. Although he has taken 6 doses, he hasn’t presented significant signs of improvement.
To explain this difference between Spinraza and Zolgensma, we must clarify that Spinraza acts only over the gene SMN2, raising the protein SMN’s “productivity”. However, the gene responsible for the main motor neuron is the SMN1, which is absent or defective in cases of patients with SMA.
Therefore, this treatment is our one and only hope to save Davi.
We kindly ask for your donation and engagement on social media to help us raise funds to have the treatment.
Help us save Davi! What if it was your child?