Saving Lives. Delivering Happiness.
Have you ever heard of Nodding Syndrome? Yeah, I hadn’t either. That’s because it’s a relatively new and rare neurological disease that has broken out in South Sudan, Tanzania, and Uganda. The world knows next to nothing about this disease that affects children between the ages 5-15. The primary symptom is that kids appear to “nod off” and lose contact with the world around them. But – these kids aren’t sleeping – they are experiencing seizures. Each seizure (and there may be many each day) diminishes mental capability little by little.
The results of Nodding Syndrome are devastating. By the time children with Nodding are age 12-13, they often look like a 6-year-old. Kids can lose control on their bodies and can’t feed themselves, much less play with other children. Most are kicked out of schools since their care requires special resources or expertise that isn’t available. Strangely, the seizures seem to be triggered by food. Thus, kids with Nodding suffer severe malnutrition. Because there is no facility or means to care for these kids, parents often have to tie up their own children to keep them from wandering off during a seizure and hurting themselves.
There was no means for care, no hope, no one paying any attention to these families… until now. Hope for Humans is the result of a trip Dr. Sally Baynton and Dr. Suzanne Gazda trip to Uganda from 2009 – 2011. Dr. Gazda, a doctor of neurological disease and disorders, discovered hundreds of children with Nodding Syndrome: a disease she had never seen in her 20 years of medical practice. Upon their return to the states, Dr. Baynton and Dr. Gazda transformed an already established nonprofit, Gulu Hope, into Hope For Humans.
One year later, Hope For Humans was able to open their first care center. What started as one classroom’s worth of a facility, is now expanded to a full campus including staff quarters, a kitchen, dorm, piggery and chicken coop. Children with Nodding attend school 6 days of the week. They are provided with 2 vitamin rich meals each day, uniforms, and basic hygiene needs. Hundreds of families attend the center. That’s hundreds of changed lives!
These two women are amazing. Seriously, who can say they setup a care center for hundreds of families, in a region with little resources to offer, in just one year. Many of the kids have regained the ability to talk and their seizures are less severe and less often. At this school, these kids get to play again, and that is no small victory.
I had a chance to sit down with two volunteers who have been with Hope For Humans since the beginning, Ana and Adrianna. When I asked the girls why they got involved, one answer wasn’t enough:
“There’s so much to be done!”
“After seeing the Ugandan, struggle… It’s hard to forget. You can’t shake that off.”
“We have Ugandan friends now, that we want to help out.”
“The founders are such strong, inspirational women. They make us excited to volunteer.”
Ana and Adrianna donate their time every Sunday to sell beautiful handmade necklaces. The necklaces are made by parents of kids with Nodding Syndrome, and all of the proceeds go right back to them. The necklaces are actually really cool, so it doesn’t even feel like you’re giving to a great cause. You’re just getting some bomb-ass jewelry!
Hope for Humans has one defining mission statement: change the way people live. There are hundreds of non-profits in place in Uganda, but none of them assist kids with Nodding Syndrome. Not to mention, the research Hope for Humans does is totally uncharted medical territory. It has huge potential to aid in the fight against other neurological diseases. I think it’s an admirable undertaking. We’re all in this together, right?
If you agree, or want to know more, please check out the links below! Or just come to the HOPE Farmer’s Market any Sunday from 11:00 – 3:00 and meet Ana and Adrianna in person!
I’m Brooke, the author of the blog you’ve just read. Working with the HOPE Farmer’s Market has been so great, but unfortunately I will have to leave HOPE to finish my last semester at Baylor University this fall. I will graduate with a major in political science and a minor in poverty studies and social justice. When I’m not blogging, my days are full of studying for the GRE and applications. I know I’m super exciting this summer, right? But every blog, I’ll let you guys know something a bit more interesting about myself and this week’s fact is:
I was bit by a sea lion in the Galapagos! Still have the scar!