Join Eduardo's Fight Against Aggressive SMA

Hi everyone! My name is Eduardo Andreucci Martins. This GoFundMe was created by my mom and dad, with the help of wonderful friends in Charlotte, NC, to share my story and raise awareness about my diagnosis — Spinal Muscular Atrophy (SMA) Type I. It’s a rare and aggressive neuromuscular disease. While there’s currently no cure, there are treatments that can make a big difference in my life.

When I was 4 months old, my parents noticed I was unusually clumsy and showing signs of delayed motor development. Concerned, they sought professionals help, and on August 19, 2024, I was diagnosed with SMA Type I. This rare and aggressive disease had a life expectancy of just 2 years until recent advances in treatment.

“Spinal muscular atrophy (SMA) is a genetic disease that causes weakness in the muscles that control movement and breathing. The disease is progressive, meaning that symptoms worsen over time. SMA is caused by the progressive degeneration of motor neurons in the spinal cord and motor nuclei of the cranial nerves.” Source: INAME.

Thanks to God and these professionals, I was referred to start treatment to block the loss of motor neurons by starting treatment with Nusinersena (popularly known as Spinraza).

Since this disease is relatively new, we have few treatment options in the world. And one of these options is gene therapy, with the drug called Zolgensma – the second most expensive drug in the world! This SINGLE DOSE drug is capable of repairing the genes in my DNA and I begin to produce proteins that my body does not currently produce.

Today my parents are giving me all the support I need with my medical appointments, motor, respiratory, nutritional, occupational and speech therapy. But all my treatment, which will last for a long time, is very expensive. That's why we're here telling you this story and asking for help to cover all these expenses and everything else I may need in the future.

You can see that I already have a looooooooooot of stories to tell! If you want to know more, check out all the details in the tabs on my website!! =) Want to follow my day-to-day life? Follow me on Instagram @ameodudu