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Thursday, October 17, 2019
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The Philanthropist

Julen Smiles – Laura Gonzalez-Rua

Background

As the mother of a special needs child, Laura Gonzalez-Rua became aware almost immediately of the amount of items needed when it came to medical care. Gonzalez-Rua’s son, Julen, was born with an unknown genetic syndrome and required a gastronomy tube (or g-tube) at just two months old. “The carrying bag that was sent to us by our medical supply company through our insurance was practical but pretty intimidating to look at,” she says. “ It’s long, all black, and heavy. I flashed forward thinking about the day he’d hopefully walk or run and thought there has to be a more subtle, inclusive option.”

Mom Power

After searching, Gonzalez-Rua found a community of similar-minded parents, some of whom had “Mom-engineered” solutions that included g-tube backpacks, shoes for kids with braces and specialized blenders capable of blending food down to fit through the thin tubing of a g-tube. Unfortunately, she says, these items are not covered by medical insurance. And so, Julen Smiles was born. “We hope to provide a range of products that will help improve the quality of life for special needs kids and their families,” says Gonzalez-Rua. “Honestly, my mental wish list constantly grows as I encounter things that aren’t covered by medical insurance, but are practical necessities. At this point, we are not limiting ourselves to any particular products.”

Sharing Knowledge

In addition to providing these items to special needs families, Julen Smiles hopes to support the parents who create and sell the products, building a community of families who can understand the challenges they face. “Parents are constantly sending each other surplus items when they no longer need them, offering advice and suggestions on how to make feedings easier and other aspects of life easier, and generally understanding each other in a unique way,” says Gonzalez-Rua. “We have compiled a list of mothers who have set up different online stores, many through Etsy, who have different small businesses creating products that help other families.”

Looking Ahead

Though Julen passed away earlier this summer, the Gonzalez-Rua family sees the organization as a way to honor his memory and bring awareness to a subject many know little about. Though new, the organization is hard at work planning events and awareness campaigns and is always looking for donations to help other families make their daily lives just a little bit easier. “We were given a peek into a very difficult and daunting world that most people don’t know or talk about,” she says. “We plan to spread awareness and help families obtain whatever it is they need to make their child’s life and their lives as wonderful as possible.”


julensmiles.org

Author: Andrea Carneiro

Andrea Carneiro
the authorAndrea Carneiro

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