Jim Grant/Nevada AppealDayton
Monika Moser's youngest daughter will never be normal.
Annabeth Moon Moser, a day shy of 5 months old, likely will never be able to feed herself, Moser said, much less live alone.
As it is now, she is 75 percent deaf, has one kidney and a misplaced pupil. Her brain is one quarter the size it should be, surrounded by fluid and severely damaged. Annabeth can't control her head movement.
"Baby's are supposed to be born normal, without any problems," Moser said, talking through the tears. "... When you turn 70, then you're supposed to have all these medical concerns and problems. Babies are supposed to grow up - the terrible 2's and the terrible 4's and draw on the walls and poop on the floor, and ... go to school and go to dances, and get married, and have babies, and she's never going to be able to do any of that, and it really makes me mad that she got denied an awesome life.
"She got robbed."
Annabeth, the youngest of Moser's three daughters, was born with a rare chromosomal disorder called Trisomy 9 mosaicism, a disorder Moser said is known to affect fewer than 100 people in the world and one which baffles even her pediatrician.
The fact that Annabeth made it to three months old was enough to bring everyone at that pediatrician's office to tears, Moser said - Annabeth wasn't expected to live longer than a month.
It's a life that Moser celebrates, even as she and her husband are buried by medical bills as they taxi to specialists in California and plead for payment plans and struggle to find the $200 a week just for a special baby formula that Annabeth needs. As a result of her condition, she has a severe lactose intolerance, making even breast milk almost lethal to her: Moser said her stomach was found filled with pus and blood just months into her life.
In total, she said, the medical-related debts have hit $30,000, with more on the way. It's caused her to hate answering the phone out of concern that it'll be a bill collector or doctor's office wondering where the check is. She's already fretting over her husband's wages being garnished when he goes back to work in the summer.
Moser and her husband live in a nice house in Dayton, with a big backyard. They never had a lot of extra money, she said, but they made it work. She's a disabled veteran from the U.S. Air Force, receiving disability pay, and her husband is a roofer who makes good money on 17-hour days for six months a year but at the cost of no workplace health insurance. The cost of getting their own health insurance was too much for them to afford with two healthy daughters, Moser said, and so they opted to pay out of pocket for the routine checkups and other hospital needs.
She said they had expected Annabeth to be healthy, like the sisters that Moser described as thinking they were "WWE wrestlers."
They found out Annabeth's condition about a month after she was born in November - and the same day her husband was laid off for the winter months. Since then, she said, they've been fighting with Medicaid and hospitals and governments for any help they can get.
"I don't know how to fix anything," Moser said. "I used to be able to fix everything."
Moser described herself as never asking anything from anyone, not even $20 from her mother. But now she's at her wits' end.
Now she relies on her eldest daughter, 4-year-old Lorelei Moon Moser, to give her five minutes for a shower without needing to hold Annabeth. She said her baby cries whenever she's not being held by her mother - unless her big sister is joking with her, in which case Annabeth does something she never otherwise does. She laughs - laughs like "someone just told the funniest joke and you're going to laugh until you start crying," Monika said.
She also ran into other good people out there, Moser said. A person from her church contacted the Dayton Pizza Factory for a fundraiser, and the Smith's Supermarket there has a donation jar also. Another stranger set up a special bank account in their name to help with Annabeth, she said.
"All the nice people came out of the woodwork," she said.
Donate to Annabeth
The Pizza Factory, 185 U.S. Highway 50 East, in Dayton, will donate 10 percent of all its proceeds today to help pay for medical costs for Annabeth Moon Moser, who suffers from a rare genetic debilitating genetic disease.
Online:
Monika Moser, Annabeth's mother, maintains several web pages to provide emotional support to other mothers in similar situations and share more information on her baby's condition.
• bythelightofourmoon.weebly.com - An informational page about her daughter's condition and the Mosers' struggle.
• bythelightofourmoons.blogspot.com - A diary Moser is writing to Annabeth.
• www.facebook.com/OurRareMoonBaby - A Facebook page with updates about Annabeth.
