UNION, Mo. — A Franklin County family traveling weekly to St. Louis for treatment for a girl with a feeding disorder has to go to Ohio for more help.
Samantha Jenkins, a 25-year-old mother of three children, discovered that her oldest daughter —who has been diagnosed with level three autism— has a Pediatric Feeding Disorder. She has exhausted resources available to her in Missouri.
Samantha's 6-year-old daughter, Marley Grace, "requires substantial support. She has to have a one-on-one pretty much at all the time throughout school, at home [or] when we're out and about," Samantha said.
The family will be traveling to Columbus, Ohio, for an 8-week intensive therapy program that begins on June 24. Medicaid denied the medication and therapy in the state of Missouri, according to Samantha. She does not believe she can apply for Medicaid in Ohio.
This particular disorder affects 1 in 37 children under the age of 5 in the US, according to the National Children's Hospital website.
The site shares symptoms for parents to watch out for in their children:
- Trouble eating, chewing, and swallowing. This may include choking, gagging, coughing, holding food in their cheek pockets, spitting food out, mashing or sucking on food, or struggling with certain textures
- Trouble gaining weight because they don’t eat or drink enough
- Needs supplements (e.g., Pediasure®) in order to grow
- Gets enteral feeds (e.g., NG tube, G-tube)
- Is a selective eater, extreme “picky eater.” This includes refusing to try new foods or certain types of foods and/or picky about flavors, brands, texture in a way that limits their diet
- Throws tantrums at mealtime. Has more stress at meals than non-mealtimes
- Won’t drink or eat from age-appropriate supplies.
- Has a sudden and large decrease in eating/drinking after a certain event such as choking, surgery
Samantha said that her daughter has not gained weight for a year. Marley has recently lost five pounds.
Feeding disorders and eating disorders are not the same thing. Originally, Marley was diagnosed with Avoidant/ Restrictive Food Intake Disorder which is similar to Anorexia or Bulimia. Samantha expressed frustration about the misdiagnosis. She said that when they first visited Ohio and saw a specialist she learned that Marley had a Pediatric Feeding Disorder the entire time.
Over the past year, Marley has been in feeding therapy locally. Unfortunately, "She has made no progress," Samantha said. If this intensive therapy does not work the next step would be a feeding tube for Marley.
"It's a lot but I am willing to do whatever it takes to get Marley help," Samantha said.
Samantha is concerned about her daughter needing a feeding tube because of her severe autism and sensitivity.
"I am worried she will pull the feeding tube out," Samantha said. "It seems like Medicaid would rather pay for a feeding tube than pay for the therapy, which is very said."
Marley is the oldest of her siblings and she is the only child that is neurotypical.
"I was 18 years old and clueless so I am learning," Samantha said speaking to her experience of becoming a mother of a child with special needs. "You would have thought we would have learned that in school to be educated with special needs children but where I grew up there was nothing."
She wants to raise awareness for other children who face the same obstacles as Marley. "There is no support in Franklin County," She said after several failed attempts at partnering with local businesses to fundraise. "There is nothing. There is no therapies around here. ... Feeding therapy, communication therapy that's all a 45-minute drive for us weekly."
On May 14, Sauce on the Side will be hosting a fundraiser to benefit Marley. If customers who eat at the Chesterfield or Wentzville location mention Marley's name 15% of sales will go to help Marley.
If you'd like to help this family click here to donate.
