BIG SPRING, TX (KWES) - 8-year-old Seth is like any normal kid, he loves Pokemon, dinosaurs and sports. But he's not allowed to to run, jump, push, or pull anything.
Seth was diagnosed with a connective tissue disorder called Ehlers Danlos and he also has a rare heart defect called Anomalous aortic origin of a coronary artery (AAOCA). It's the second leading cause of sudden cardiac death among teens and young adults. Doctors recently reviewed his CT Angiogram and next month, Seth will have to undergo surgery to prevent future problems when he got older.
"I'm scared," said Seth's mother, Jamie Forrester. "It's a lot to take in. Our family has gone through a lot medically in the past year. It was really sudden. We were told for the past 8 months, this was something he'd worry about when he was older, when he does competitive sports or joins the military. Now we're told something needs to be done or he could be one of those cases you could read about. It's scary."
Seth's parents have been working in fundraising efforts from working overtime to selling baked goods before Seth goes to Fort Worth next month. But not too many people know about Seth's rare heart condition. Which is why Forrester reached out to a close friend of ours, NewsWest 9 Meteorologist Derrick Jackson.
"I sent the message with the off chance," said Forrester. "We just toured the Newswest 9 center. Seth said, 'Oh, I know that place! I know that green screen.'"
A post on social media with a picture of Seth holding a sign showed if he reached 500 likes, Derrick will wear a tie covered in hearts for AAOCA awareness.
"I immediately messaged her back," said Derrick. "I was like, 'You don't have to get likes or shares. I'd love to do this but at the same time we were thinking we need to do our best to raise awareness. Not only am I able to help but you can see the community come together to help him out as well so I thought that was very important."
The post exceeded its goal with over 800 likes.
"He's a good kid, it's hard," said Forrester. "It's hard asking for help. If nobody helps us fundraise and nobody does anything, I want people to know that there's these things out there, that Elhers Danlos Syndrome. We went almost two years of him in pain every day."
It's a step to make sure even during tough times, that people don't forget the struggles for kids like Seth, who are just wanting to be a kid.
"Her message touched my heart," said Derrick. "I know it'll be a hard time for all of them. I'm going to stay in touch with Seth, his family, his brother. I'm going to do anything I can to help out. I'm more than happy to do something like this."
The family is holding a benefit on Dec. 31 at The Train Car. For details, click here.
During this journey, the family asks that you send a card to Seth. You can log on to the Facebook page My Sweet Zebras, where you can also contact the family and keep up with their fundraising events and efforts.