Amelia Gareau, an 11-month-old Prince Albert girl, takes naps, plays and makes a mess just like any other child, but there is a difference.
She just can’t eat like other children.
Amelia needs a feeding tube to survive because she has Hypotonia, a low muscle tone disorder, so she has difficulty swallowing and often chokes on liquids.
Almost three months ago she was admitted to the hospital with failure to thrive, she had stopped eating and lost five pounds.
Originally the doctors thought Amelia wouldn’t need the feeding tube for very long, said her mother Kristal Litschel, but she hasn’t been improving fast enough so she may need to use the tubes for a couple of years.
Litschel says there is no support in Prince Albert for feeding tube children.
“There are a lot of parents with feeding tube children in Prince Albert, (but) you don’t see them out because everyone’s scared to go out because everyone looks at them like they’re freaks,” she said.
Sitting on the floor, playing with her daughter Litschel gestured to another woman and child in the room and said “if I didn’t know Kathy and Peyton I’d feel like I’m all alone in the world.”
Peyton Yakubchuk is 16 months old and also needs a feeding tube.
Kathy Berden, her mom, and Litschel met by chance, their daughters were having their feeding tubes
put in on the same day and they have been sharing the experience since then.
Litschel said people who don’t understand about feeding tubes can be very rude.
“It’s really frustrating, we’ll go out shopping and people will look at her with disgust. For example on Saturday we went to Wal-mart and there was a lady standing behind my fiancé just repulsed by Amelia. I was so upset.”
Amelia crawling on the floor, laughing and playing with Peyton – besides the small feeding tube running across her face and up to her nose you would never know there was anything wrong with her.
Despite how happy Litschel and Berden look with their little girls, there are some hardships that go along with having a child on a feeding tube.
They are unable to stray very far from home.
The children get fed every three hours and each feeding takes an hour so they have only two hours free at a time.
Litschel said this can make doing even simple things like grocery shopping difficult and longer trips are almost out of the question.
There are also many costs associated with having a child who needs constant care.
Litschel said she should have been back at work three weeks ago, but hasn’t been able to find anyone willing to take care of Amelia.
“No daycare will take them, they’re a lot of work. I did find somebody to watch Amelia but she wanted to charge me ten dollars an hour.”
Berden said she is able to work but she and Peyton’s father have to arrange their shifts so someone is always with Peyton.
“You do what you ‘gotta do to make it work,” said Berden.
“We’re sacrificing a lot of things but we wouldn’t have it any other way. I’d rather sacrifice all the extras in life and live on a very tight budget than not have her here at all,” said Lischel, with a loving look at her daughter.
There is no government support for parents with children like Amelia and Peyton who need round the clock care, this is something Litschel would like to see changed as well.
“There’s no financial support at all and that’s really where we’re having a hard time.”
Litschel and Berden want to put together a support group for feeding tube parents so the parents can have people to share their stories with and have support, but especially so that children can be around others like them.
“As they’re growing up their self-confidence is ‘gonna be really battered and bruised if they have this tube and people look down upon it, so if they are around children that are like them with tubes and everything (it’ll) be easier,” said Litschel.
Litschel and Berden say they want people to understand that it’s just a feeding tube, there’s nothing really wrong with their children and that if they have questions just ask, don’t stare.
Feeding tube are necessary for many different reasons, many of which have nothing to do with the child’s mental capacity, these can include failure to thrive, refusal to eat, and disorders of the esophagus.
The first annual Feeding Tube Awareness week runs from Feb. 6 to Feb 12.
For more information visit feedingtubeawareness.com.
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