Mom fights for awareness of rare birth defect daughter was born with
LEWISTON, ID —
A local mom has spent the last four years trying to gain awareness for her daughter’s illness, and now she has Governor Butch Otter’s attention.
The illness is called gastroschsis, and Ashley Roetcisoender found out her daughter was affected before she was even born. Since that point it’s been an uphill battle, not only for her daughter’s health, but for awareness as well.
"When she was first born we spent the first six months hospitalized in the NICU or the PICU,” said Ashley Roetcisoender, Macy’s mother.
Ashley Roetcisoender’s daughter Macy was born with gastroschisis, a syndrome that forms while the baby is developing.
"The intestines and other organs sometimes come outside, and between the amniotic fluid, and all the other fluids in there, a majority of the intestines die, or they get twisted and die off, or they don't really fully form,” said Ashley.
Because of this, Macy only has a portion of her intestines, and has a hard time absorbing nutrients. She has had ten surgeries, and years of treatments, but this week she turned four years old.
"Get treats,” said Macy.
“Your favorite thing is to get treats,” said Ashley.
Now for Macy, most of the big procedures are behind her. She is still affected by the illness, but can live a normal life.
And as for Ashley, the last four years have been spent fighting for awareness.
"I submit paperwork to the governor to just try to inform him as well as the community what gastroschisis is,” said Ashley.
And she just made some major headway.
"Finally this year I was able to get a response from the governor’s office, and it's basically saying that on July 30th of this year, they are going to declare it Gastroschisis Awareness Day."
Ashley said she won’t stop fighting for her daughter.
"I haven't met anyone as strong as she is, so I'm just trying to be the voice and I’m just trying to get people to know more about it,” said Ashley.
Ashley’s iisn’t stopping with just Idaho. She’s planning on starting a petition to make Gastroschisis Awareness Day a national awareness holiday.