Upstate mom asks for help for son suffering from rare vein condi - FOX Carolina 21

Upstate mom asks for help for son suffering from rare vein condition

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CLINTON, SC (FOX Carolina) -

An Upstate mom is asking for help after finding out her 8-month-old son is suffering from a rare vein disease. 

The unusual condition can be deadly, especially for small children.Though the family found a doctor who can help in New York City, getting there and paying for multiple surgeries was not something they were prepared for.

Eight-month-old Kiah Mann has spent the majority of his short life in the hospital, but it wasn't until 2 months ago that his mom Tiffany Johnson finally received some answers.

"Almost 6 months we noticed his head getting wider so we took him to the doctor. They ordered an MRI and CT scan and that's when they found out he had vein of Galen aneurysm malformation," Tiffany explains.

The Vein of Galen is a main vein that runs blood from the brain to the heart, but Kiah has an extra vein causing more blood to pump to his brain causing a severe amount of pressure in his brain.

Tiffany says it's hard to watch her son suffer, watching the veins on his head bulge more and more everyday.

"He probably feels like he has a pounding migraine everyday all day," said Tiffany. "He can't sit up, he can't crawl because his head is so heavy."

Thankfully, a doctor in New York City is willing to perform surgeries on Kiah in hopes he will survive to live a normal life.

"They will block off the veins a couple at a time each surgery," Tiffany explained. "They will try to stop it from having so much pressure."

Doctors say it should take 3 or 4 surgeries over the next several months, but for Tiffany that means more flights to and from New York, more medical bills, all while taking care of her other kids back at home.

Tiffany says, "We just weren't financially prepared for this. We never even knew this was what was wrong. It was just a nightmare basically."

There's a GoFundMe account set up for Kiah. 

All donations will help them with those flights and treatments mentioned above.

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