Toddler's family hopes for transplant, generosity

- She was told her child would never lead a happy life, but Mya Arsenault’s smile is proof that she’s thriving.

Mya was born with a birth defect that's left her unable to eat or drink on her own. But the 3-year-old's life could soon change dramatically.

In her first three years, Mya has endured countless, surgeries, routine trips to the hospital, and hours each day hooked up to a machine.

Mya was born with gastroschisis.

“I wasn't able to hold her or anything. She just went straight into surgery,” Mya’s mom, Jesenia Venerio remembers. “From there they took out about 90-percent of her small intestine.”

Without a functioning digestive system, Mya relies on a series of ports and tubes implanted in her tiny tummy. Every day, for 17 hours each day, Mya gets food, fluids and medications through the tubes, which is attached to a backpack.

For her mom, keeping up with Mya isn't always easy.

“She's at that age where, you know, she's very independent and ready to go,” her mom said. “When she is hooked up she can't really do what the other kids do… and it's hard because I know that she understands. She's such an old soul, but I know she definitely feels limited in what she can do.”

But each day, Mya gets a few hours of freedom.

Hopefully she'll soon have a lot more of the freedom she craves. Later this year, Mya will go on an organ transplant list to receive a new small intestine - and the chance for Mya and mom to finally lead a normal life together.

“No matter what happens, medical wise, just for her to be happy. That's all that I can ask for her life,” her mom said. “Her whole life is going to be trial and error and full of ups and downs and I just want her to know that she's special and she's going to get through it.”

As you might imagine, insurance simply doesn't cover the overwhelming costs of Mya's care. Her family is holding a series of fundraisers to help.

The Children’s Organ Transplant Association’s Tampa chapter planned an event at Painting with a Twist in Carrollwood on May 21 from 1-4 p.m. to benefit Mya’s medical costs. Learn more about the event at http://www.paintingwithatwist.com/tampa-carrollwood/ and use passcode COTA.

Information about other events and more on Mya’s story is available at http://www.cotaforteammyaa.com

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