Charity provides custom stuffed animals for children with special medical needs

Jonah shows off his Tubie Friend. (Photo courtesy Tubie Friends)

Nonprofit organization Tubie Friends provides customized stuffed animals with feeding and other types of medical tubes attached to them to help make life easier for children who rely on such devices. The group will be holding its annual fundraising auction to benefit those charitable efforts later this month.

Shannon Gonsalves is a teacher at Brier Elementary School and helped to co-found the charity along with two other mothers who all had children with medical conditions that required using feeding tubes. She said of its origins, “We had created them for our own kids and then other parents who were in our online support group started asking, ‘Well how do I get one for my kids?’” After initially telling those parents how to craft them “it dawned on us that new families to tube feeding don’t have spare supplies yet to make their own,” Gonsalves said.

The three women began asking tube feeding communities online if people had spare feeding tubes that they no longer needed which could be used to help those parents make the stuffed animals at home. Based on the feedback they received, the Tubie Friends organization itself was born shortly after in 2011 and took off. “It literally exploded,” Gonsalves said, “I mean there were so many people who wanted it that we decided to start a nonprofit.”

Organizers initially joined a similar group that was larger, but then later split off onto their own when the other organization started to “go off into the realm of paying people and we didn’t want to be a part of that,” she said.

Gonsalves said that her son was 2 years old when he had to get a feeding tube. Prior to getting the tube, he would play with and touch a doll that had a feeding tube, which made the experience less frightening. “And it dawned on us, that if we had our own doll like that and we looked into it and they were ridiculously expensive,” she said, adding that at the time, available dolls were from a medical equipment manufacturer.

So Gonsalves set about making her first one out of a stuffed animal, which still included a message for how to properly place the feeding tube.

This bear with a halo brace is an example of the 3D printed devices made by Tinius Designs in Mill Creek. (Photo courtesy Tubie Friends)

When Tubie Friends began, parents were receiving expired feeding tubes for use in the stuffed animals, but the organization now gets them contributed directly from a manufacturer. Due to the volume of requests, Tubie Friends has also expanded from its original design to now also offer their plush friends with other medical intervention devices such as tracheotomy and oxygen tubes, and central IV lines. They have even partnered with Tinius Designs in Mill Creek, which has used its 3D printer to make and donate various splints, halo-type braces, prosthetic limbs and other devices for use on the stuffed animals.

The animals are made by volunteers – who are dubbed “surgeons” — who mirror a child’s individual medical interventions on the animal by attaching a similar, although nonfunctional, tube or device on it. “We’re trying really hard as much as possible to customize these to completely match whatever the child has implanted on their body or anything that just would match them as closely as possible,” Gonsalves said.

Each finished stuffed animal functions both as a comfort aid that’s relatable for children needing various types of tubes as well as a teaching tool for the child, their family members, friends and caregivers. Each Tubie Friend comes with a letter for parents that includes information resources and support groups available along with a custom card signed by its “surgeon(s).”

The modified stuffed animals are provided to people strictly by donation. There are suggested donation amounts listed, which are linked to prices of the materials for the various offerings, but people who can’t afford that amount can still get one as long as they can pay for standard shipping costs. “We work really hard to work directly with the families and meet as many needs as we can,” Gonsalves said.

The organization holds an annual auction that helps raise funds for sponsoring kids who are on its waiting list because their family isn’t able to contribute any amount of money. Gonsalves estimated that the waiting list usually includes about 300 children at any given time and that more than half of the stuffed animals sent out each year are “fully sponsored.”

The nonprofit doesn’t have a partnership with a manufacturer and instead typically purchases its plush characters from the Build-A-Bear Workshop due to the quality of the fabrics used and their functionality. Gonsalves said the charity’s volunteers “can open them easier and work on them and restuff them easier.” She estimated they send out approximately 2,000 Tubie Friends each year and that since its inception the organization has shipped them to children and families around the world. She noted, “We’ll ship pretty much anywhere that we can where we get a request to ship.”

The organization’s staff consists of a small board of local directors from Lynnwood, Mountlake Terrace and Mill Creek along with dedicated volunteers, most of whom have been directly impacted by someone needing to rely on having a medical tube implanted. It is a lean operation by design with no overhead for expenses such as renting office space so that donations “go back to the kids,” which Gonsalves said has been its goal all along. “We never wanted to be big enough that we were paying people,” she said.

In the past they have even held in-person community “build events,” which offer community service opportunities for local groups such as Girl Scouts, 4-H and other youth organizations, the Edmonds School District’s Work Experience program for differently-abled individuals. “We have teenagers right now even who are at home in Mountlake Terrace cutting” fabric and preparing cloth items that will then be attached to the stuffed animals, she said.

The COVID-19 pandemic and its economic impact, particularly on businesses, has made Tubie Friends’ annual online fundraising auction, set for April 22-25, more challenging due to fewer items being donated this year. Themed gift baskets consisting of several goodies and/or gift cards are put together for people to bid on. Volunteers have been busy working to collect donations and getting the baskets and envelopes to be mailed with them ready.

Tubie Friends’ Cristin Smock (left) and Shannon Gonsalves (right) accept a donation from Ace Hardware in Mountlake Terrace. (Photo courtesy of the Myers Group Ace Hardware)

The Ace Hardware at Cedar Plaza in Mountlake Terrace recently made a donation of $1,640 to Tubie Friends after allowing the store’s customers to round up their purchase amount to the next nearest dollar during the month of February to benefit the organization.

Jodie Russell, a retiree in Mountlake Terrace, is in charge of coordinating and assembling the auction’s gift baskets. Russell likes that the organization donates any funds raised solely to its mission rather than paying staff, noting that “every penny goes to the kids, where it’s supposed to go. That was the thing that really impressed me.”

Basket themes offered include coffee products, Seahawks merchandise, home spa-type personal care items, ones with Italian- and Mexican-type food items and gourmet foods, plus toys, games, craft supplies, family activities and gift cards for area businesses.

“The way that I look at it, it doesn’t cost anything to volunteer and it’s amazing how grateful people are,” she said of her efforts. Russell added that she looked forward to eventually being trained as a Tubie Friends “surgeon” when pandemic-related health guidelines allow for group events to be safely held again.

Gonsalves said while being a full-time teacher, raising her own family and helping run Tubie Friends keeps her busy, it’s definitely worth the efforts and time. “Knowing that we’re giving back is probably the most rewarding part, just to see the impact that it’s made….The stories that we get from families and emails are pretty powerful,” she said.

— By Nathan Blackwell

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