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SHE'S QUITE A FIGHTER

MEET ONE OF THE KIDS SUPPORTED BY TARC'S WINTER WONDERLAND FUNDRAISER

Article by Linda Ditch

Photography by Supplied by family & TARC

It's impossible not to smile when you first meet two-year-old Izabell Hodges. She's a beauty with her big brown eyes framed by pretty pink glasses, rich brunette hair up in pigtails, and sparkly silver sneakers. She radiates joy to everyone around her.

Izabell –known as Izzy to her family—had a rough start in life. Born at 26 weeks, she experienced twin to twin transfusion syndrome, a rare pregnancy condition with identical twins in the womb where one twin gets too much blood while the other doesn't get enough. Her sister, who passed away four days before birth, was getting too much blood. Izzie wasn't getting enough. She was born anemic and had to get blood transfusions in those early hours of life just to stay alive.

Izzy spent her first 120 days in the NICU at Children's Mercy-KC, with mom Melissa and dad Taylor keeping watch. She was diagnosed with hydrocephalus, epilepsy, and cerebral visual impairment (a form of blindness.) 

"She's had 18 brain surgeries," Taylor explains. "Twenty surgeries total. She's got a [gastrostomy tube], and she had heart surgery when she was a month old. She's quite the fighter."

Before leaving the hospital, the Hodges connected with TARC, Inc's tiny-k early intervention services. This is the only program of its kind in Shawnee County for families of children birth to three years old diagnosed as developmentally disabled or delayed. A tiny-k team consists of a physical therapist, occupational therapist, early childhood educator, speech pathologist, family service provider, and feeding specialist. Anyone who qualifies gets these services free of charge.

"Last year, we served over 900 children," says Sherry Lundry, development director at TARC. "The thing that is really amazing about that is we cannot have a waiting list, and we cannot charge. We are state-mandated to do that. Parents can choose to pay if they want, but basically, most of our families are not able to pay what it would cost. To me, that is huge. That is a lot of children, and those children are the ones who are going to need the most help. If we don't help them and get them as far along as they can go, it's going to be even harder on the public education system." 

TARC was founded in 1954 by a group of parents looking for ways to improve the lives of their children with developmental, intellectual, and related disabilities. Today, kids can stay in the tiny-k program until they turn three, when state law dictates they go into the public school system. Then TARC helps families with targeted case management to guide them through those years. Once they leave the school, the TARC Avenues day program can help them become more independent by teaching life and employment skills.

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Fundraisers like the annual Winter Wonderland drive-through light display are essential to keeping these services available to families. For every dollar donated to TARC, 90 cents goes into programing for the people they support.

Lundry notes, "It's supporting the work right here in Topeka. There are 900-plus children like Izzie with all kinds of diagnoses who need what we can give them."

A TARC team works with Izzy at home under the watchful eye of her grandmothers, who take turns caring for her while her mom works as a public health technician for the Air National Guard and her dad is at work as an automatic door technician. Raising a special-needs child isn't cheap. While the family does have health insurance through Melissia's work, the fact that TARC services are free of charge offers them peace of mind.

"I stopped counting after we hit $5 million on surgeries for her," Melissa said. "It's awesome knowing that we're covered. Even if I lose my job tomorrow, I know Izzy's services are not fully dependent on that."

Taylor added, "We thought a crib was expensive, but her physical therapy stander device was like $20,000. TARC's so awesome. They have equipment they loan out to you while you go through the insurance process, and then we're able to give their equipment back to them so it can go to another person."

The Hodges plan to volunteer at this year's Winter Wonderland event to show their appreciation for all TARC has done for Izzy. In its 24th year, the holiday display features approximately 1 million lights along a 2-mile drive at the Lake Shawnee Campground. It's open nightly through December 31st from 6 to 10 p.m. The suggested donation is $10 per vehicle and $20 per bus.

Currently, Izzy is learning to push up on her way to crawling. Also, thanks to the work of the TARC feeding clinic, she has begun to eat little pieces of food or stick out her tongue when it's something she doesn't like. In the past, her reaction to any food was to gag and throw up. 

"The whole - 'it takes a village to raise a child' is one thousand percent true," says Melissa. "Tiny k quickly became part of our tribe that kept us grounded and kept us informed. I one hundred percent believe we wouldn't be where we are now without TARC."