West Syndrome is no match for Project Marcelo
In 2011, doctors diagnosed Marcelo Mugica with West syndrome. West syndrome, or infantile spasms, is a type of epilepsy most common in babies between 3 and 12 months old. According to the Epilepsy Foundation, West syndrome typically causes brief seizures that occur in rapid succession.
After his diagnosis, Marcelo’s aunt created a GiveForward Page that raised a whopping $50,000 in one month! This support helped Marcelo’s family cover his medical expenses, including a major surgery to remove half his brain.
Today, Marcelo walks, talks, and knows all his ABCs. To help others navigating West syndrome and other neurological disorders, Marcelo’s family recently established a non-profit organization called Project Marcelo. Project Marcelo held its first event last Sunday and raised over $11,000 to support Diego, another boy suffering from West syndrome.
We caught up with Marcelo’s mom, Viviana, this week to learn more about her family’s journey with West syndrome and Project Marcelo:
What was it like when doctors diagnosed Marcelo with West syndrome?
We felt like our world had just been turned upside down. We didn’t just find out that he had West syndrome, but that he had suffered a massive stroke before he was even born. The more we learned about West syndrome, the more concerned we became about his development. As time went by we learned that no matter what happened, we would always love him and give him the best life possible.
What role did GiveForward play in your family’s journey?
We were extremely fortunate that, in Marcelo’s case, his condition was operable. Marcelo underwent the most invasive type of brain surgery called a Hemispherectomy to eradicate his seizures. The money we received from GiveForward gave us the opportunity to provide to Marcelo the best possible therapy treatment which was crucial after surgery.
It’s been 3 1/2 years since your GiveForward Fundraiser closed. What’s Marcelo been up to and how is he doing?
Marcelo has been very busy with school and intensive Physical, Occupational and Speech Therapies. He is a happy 4-year-old who loves the beach, airplanes, Legos and numbers. He is a big brother now and spends endless hours playing with his younger brother who sees him as his Superhero. The road for Marcelo will be long and winding, but each day we see progress which is incredible. Most important, he is healthy and seizure-free.
Congratulations on launching Project Marcelo last weekend. What inspired you to start a non-profit organization?
Project Marcelo was conceptualized years before it was born. We always knew that we wanted to give back and do our best to provide for other kids the opportunities Marcelo has had with the support he received from GiveForward. It all came during our darkest hour and it truly lifted us up and gave us hope. Your company and everyone who contributed to Marcelo’s therapies inspired us to start Project Marcelo. We had our first fundraiser for another West Syndrome child last week and hope to continue giving back in any way possible.
We’re thrilled by the progress Marcelo’s made since his GiveForward Page closed a few years ago. It’s also inspiring to read about how Project Marcelo’s giving forward to help other children with West syndrome! You can read more about Marcelo’s journey on his GiveForward Page and check out Project Marcelo on Facebook, too.