Something can, however, be done about their feelings of being alone.
That's where Tubie Friends come in. Last fall, three moms of tube-fed children started sewing feeding tubes into stuffed animals to keep their children company.
Now, just a few months later, the women -- with lots of help -- have created and delivered more than 500 "tubie friends" to children, for free.
"Our goal is just to help kids," said Shannon Gonsalves of Mountlake Terrace. Her son, Caleb, 6, has several conditions that keep him from being able to regularly eat solid food.
Gonsalves met Cheryl Burge of Beaumont, Calif., and another mom from Idaho in an online support group for parents of tube-fed children. The three women began creating tubie friends on their own, and then enlisted the help of friends and family. The Idaho mom has since split off and started her own group there, Gonsalves said.
Because feeding tubes come in many forms, tubie friends are customized as much as possible for each child, Gonsalves said.
Some children, for example, have a tube that goes into their mouth and down their throat, while others have a valve implanted in their abdomen to which the tube connects.
Some of the children are in hospitals, some living active lives at home.
"People have a really skewed idea of what a feeding tube is," Gonsalves said. "Kids can lead completely, totally normal lives with a backpack on their back and a tube hidden under their shirt and no one would even know."
Some children with feeding tubes have tracheotomies as well.
"We try to match the equipment as much as possible to the child, give them a friend that's similar to their body," Gonsalves said.
The moms and volunteers receive donations of the medical equipment and either buy or receive donations of the toys. They've had some fundraising events.
The finished products are either sent to people who have requested them or are donated at hospitals.
"We just shipped out 51 animals in two days," Gonsalves said.
Gonsalves and Burge have created a website, www.tubiefriends.com, that includes an order form for parents. They are paired with a volunteer -- called a "tubie friend surgeon" -- within two to four weeks to work together on designing the gift.
Volunteers include friends and children. Gonsalves teaches sixth grade at Brier Elementary School and some of her students have helped.
"You have a lot of kids helping kids," she said. "They can feel like they're part of a bigger thing than just their own lives."
There are many different types of conditions that can lead to a child having a feeding tube, Gonsalves said.
Caleb, Gonsalves' son, has many conditions, including gastrointestinal dysmotility and visceral hyperalgesia. The first condition prevents him from digesting at the right speed, which causes food to sit and build up in his system. The hyperalgesia is a chronic abdominal pain condition.
"His stomach doesn't process food the way it should," she said. "He eats a little, but only small, little bites."
For the first eight months when he had to use the tube, as a small child, he wore a type that goes down the throat. It had to be inserted by his parents every day.
That was tough for everyone involved, Gonsalves said. Now Caleb has the type with a backpack and a valve.
Burge's son, Brayden, 7, has a mitochondrial disease in which his body doesn't have enough energy to digest food. It's a progressive and terminal condition, she said. At first she was told her son would live only to be 2, but has survived. He underwent surgery on Monday.
Unlike Caleb, Brayden only recently had to start using the tube. His mom helped start the Tubie Friends group beforehand, when she knew he would need the tube but hadn't started on it yet.
Making a tubie friend from a stuffed animal helped Burge to see how the tube would work, she said. Like Caleb, her son uses the type with an implant.
"I could touch it and play with it and figure it out," she said.
Burge's family met Gonsalves' family in California recently when they went down to go to Disneyland, Burge said.
It was therapeutic for their sons, especially, Brayden, to meet, she said.
"They don't see anybody else with a tube, and they feel like they're the only ones," she said.
With their tubie friends, they're never completely alone.
Bill Sheets: 425-339-3439; firstname.lastname@example.org.
For more information about Tubie Friends, go to www.tubiefriends.com/.
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