Birth trauma led to a New York state newborn’s rare seizure disorder, and paying for an incredibly expensive treatment is taking the combined efforts of an entire community.
Odin Fortner-Watrous suffers from a rare seizure disorder called West Syndrome, caused by a lack of oxygen he experienced during his first moments in the world.
“He spent four minutes with no oxygen and it caused severe brain trauma, and due to the brain damage the seizures developed,” said Odin’s mother, Shayna Fortner Watrous, telling the story of his birth.
The only treatment option approved in the United States for Odin’s condition, called ACTH, costs $300,000 for a five day supply. Full treatment takes 14 weeks.
“We pay $4,600 out of pocket, per vial,” explains Shayna.
The mother of four was recently diagnosed with stage two breast cancer.
Odin’s father, Arthur, says that every dollar he makes is going towards paying for the medication.
Family and friends are donating household supplies and everyday items to the family. Country singer Landon Parker is performing an online benefit concert on February 4. A Facebook page has been created for the event.
“It gives us the opportunity to test just how strong we can be,” said Arthur.
Shayna says the treatment is already having a positive effect. Hopefully, with the help of the community, the family can complete the treatment and give Odin a better life.
Donations can be sent to:
Shayla Fortner-Watrous 13 Vine Street Bingham, New York 13901
The family requests that if you do make a donation, please put Odin’s Journey in the memo and include your name and address so they can thank you.
Cappolino Dodd Krebs, LLP – birth trauma lawyers
