There’s no getting around the fact that the world needs more heroes.
When Elisabeth and Ian Hunter of Balloch, Scotland found out that their son, Aaron, has a rare and incurable disease, they immediately began a tireless effort to fund further research, hoping for a cure. Aaron has ROHHAD, which stands for Rapid-Onset Obesity with Hypothalamic Dysfunction, Hypoventilation and Autonomic Dysregulation.
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ROHHAD is so rare, only 100 children have it worldwide. As the name suggests, this disease causes rapid weight gain, limited mobility, and trouble breathing. Since only 1 in every 70 million children develop ROHHAD, there’s very little clinical research in progress, which means there’s no treatment and no cure.
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Aaron, who is only 8 years-old, now needs an oxygen ventilator to breathe. Since he’s already a huge superhero fan, he calls the ventilator his “Iron Man mask.”
As part of their fundraising efforts, The ROHHAD Association started a “Zero to Hero Challenge.” Elizabeth explained:
“This challenge is inclusive of all ages and abilities worldwide and regardless of whether you are a trained athlete or have limited mobility, this is the sporting charity event for everyone. The Zero To Hero Challenge allows you to complete your chosen distance by doing a sporting activity(s) of your choice. You complete the challenge during superhero month and become a ROHHAD Avenger!”
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In January 2018, Aaron posted a video on Twitter, asking to meet his favorite hero, Iron Man. Elisabeth and Aaron were both shocked and thrilled when the tweet went viral!
Before the end of the day, #AaronneedsIronman was trending online… and this was just the beginning.
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Even more exciting? Robert Downey, Jr., the actor who plays Iron Man, actually saw the video and responded!
First, Robert FaceTimed the little boy, and soon he was sending Aaron text messages and promising to meet up in real life. Best yet, Robert and his wife, Susan Downey, decided to throw their considerable weight behind the ROHHAD Association charitable work.
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Robert started a fundraising effort of his own, asking his fans to donate to Aaron’s cause for a chance to win two tickets to his latest “Avengers” movie premier.
As if these efforts weren’t extraordinary enough, Robert as now made good on his promise to meet Aaron in person.
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Aaron is over the moon about Robert’s support, and tells everyone he’s now “best friends” with Iron Man, himself.
Soon, the donations began to pour in, and thanks to Robert, the foundation is one step closer to funding life-saving medical research.
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Elisabeth says that thanks to Robert, Aaron has never, ever been happier.
“My beautiful Brave Boy. This memory will never leave us, it has been magical. We have never seen Aaron this happy until now. His big heart is full of HOPE! The best bit is the help this will bring the children.”
It’s wonderful to see an actor who plays a hero in movies acting like a hero in real life. Thank you, Robert and Susan, for helping shine your light on this worthy cause!
Watch one of Robert’s videos about the fundraising effort below, and don’t forget to share this message far and wide!
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