Living With West Syndrome

By WBNG News

Living With West Syndrome

January 17, 2012 Updated Jan 20, 2012 at 10:26 AM EDT

Binghamton, NY (WBNG Binghamton) 4 and half month old Odin Fortner-Watrous was recently diagnosed with rare seizure disorder.

Odin was diagnosed with this syndrome when he was a little more than 1 month old.

Now, at 4 and a half months old, this syndrome has caused his family a lot of concern.

West Syndrome is extremely rare, primarily affecting infants from the age of 2 to 5 months old.

It can last up until the age of 5.

After the age of 5 there is a 50% chance a child can develop another seizure disorder that could last throughout their life.

Odin has been experiencing these seizure and twitches since he was just over 1 month old.

Odin suffers from a constant eye twitch and seizures, making it impossible for him to make eye contact with people.

More recently Odin is on medicine to help with his syndrome.

"It's called ACTH. It's a hormone mixed with Steroids and it is helping out miraculously, within hours he was alert. He was starting open his hand which had previously been permanently clenched, " says Odin's mother, Shayla Fortner- Watrous.

Odin was also able to make eye contact with his parents for the first time.

Odin's parents say the ACTH is the best option for the infant.

However, it's an expensive one, costing $300,000 per vial.

If you want to help Odin's family, they're holding a online benefit concert on February 4th at Stageit.com.

You can make donations through the website, or search Odin's Journey on Facebook to make donations.