Green River Star -

By Stephanie Thompson
People Editor 

Family fundraiser Wednesday night

Van still needed

 

Stephanie Thompson

Harrison Elementary School special education teacher Jessi Summerall works one-on-one with Trinity Kellum Monday morning. Trinity, who is nonverbal, was diagnosed with lobar holoprosencephaly when she was two weeks old.

Two years ago, the Kellum family shared the story of their daughter Trinity and asked the community for help in purchasing a wheel-chair accessible van.

For various reasons, only $2,000 was raised toward the purchase of that van; and as Trinity continues to grow so does the need for that van.

Although Trinity continues to grow, her condition has remained about the same, mother Kimberly Kellum said. Two weeks after Trinity was born, she was diagnosed with lobar holoprosencephaly (HPE).

According to the website familiesforhope.org, are four types of HPE exist. Trinity was diagnosed with lobar, which is considered a mild form of HPE and is where the brain is divided, resulting in some mild abnormalities.

In the most severe cases, death occurs during the pregnancy. In the least severe cases, individuals have facial defects, which can affect the eyes, nose and upper lip.

Kimberly said she is lucky that Trinity doesn't have huge facial abnormalities, she has narrow set eyes, a smaller nose and curved up lip.

"We are definitely blessed to have her because most with her condition are never born," Kimberly said.

Since birth, Trinity has been in and out of the hospital. She has been life flighted or taken by ambulance to Primary Children's Center in Salt Lake City several times. The most recent trip was in April of 2015. Kimberly was beside herself, for the first time in her life she was not able to go with her daughter on the life flight to SLC.

Trinity had to be life flighted this last time because she had a bad case of respiratory syncytial virus (RSV). She is doing fine now and back in school.

Currently, Trinity takes 13 different medications a day to help with her seizures, thyroid issues, acid reflux and allergies.

"It's crazy," Kimberly said. "I actually have to set a timer during the day because I would forget."

Trinity is still being fed by a gastric-jejunal feeding tube and gastrostomy tube. Kimberly said for about 20 hours a day she is hooked up to the feeding tube.

Kimberly was excited to talk about a new sleep-safe bed Trinity gets to sleep in now. The bed is basically like a bigger version of a crib, which allows Trinity to sleep without rolling out. Until then, she used an old hospital-type bed with rails on the side. Although it worked, it was just not as sturdy as what she sleeps in now.

Attending school

Trinity just turned 7 on April 18 and attends Harrison Elementary School as a kindergartener. Prior to her attending the school, the family had to find a wheelchair for Trinity, which was required by Sweetwater County School District No. 2. Kimberly said they had to have a way to safely transport her from home to school and vice versa.

"She loves going to school," Kimberly said. "She loves being around the kids."

While at school, special education teachers Jessi Summerall and Tammy Noble make sure Trinity is well taken care of.

"She seems to react to music and light," Summerall said.

Since Trinity is nonverbal, the teachers are always learning what her different moans and grunts mean.

"She makes herself known," Kimberly said.

Knowing this, Summerall and Noble try to get Trinity to learn how to turn things on and off by using switches. For example: one switch will turn on and shut off music, another switch will turn on and off a fan and a third switch with turn on and off lights.

On Monday, Trinity was using a button to turn a blender on and off. At first, she was startled by the noise of the loud blender and jumped and looked around, but soon she understood what pushing the button would do and continued to try it.

When they are not working on buttons and switches, there is a lot of side-by-side activities done. Summerall said they have a floor sitter, which allows Trinity to sit on the floor supported and a stander, where Trinity is securely fastened into a stand that allows her to stand upright for a while.

Kimberly said she can sit upright by herself, but not without constant supervision.

Another area Summerall is working on, is getting Trinity to tolerate touching things with her hands and learn about different textures.

"She's like everyone else," Summerall said. "She has her good days and her bad days."

Sometimes the teachers will try a different activity to see how Trinity will respond. They have noticed that they always need to try things more than once or twice with her because one day it could make her mad; and the next day she may enjoy the new activity.

"Who knows what she can really understand and what's developed," Kimberly said.

One aspect that has really helped Summerall out is the constant contact she has with Kimberly. Anytime she has a question about Trinity she just texts and Kimberly will respond quickly.

"It sure makes my job easier," Summerall said.

Summerall said she has been surprised at how well Trinity has been doing physically. She expected her to be sick a lot more than she has been, but up until recently she was having a good year.

"Once she's sick, she gets hit pretty hard," Summerall said.

How pizza can help

Kimberly is happy with how Trinity has grown, she is now 34 pounds and 40 1/2 inches long, but as she grows is gets harder and harder for Kimberly and her husband Gabe to put her in and out of the car.

"She's got her wheelchair, but it is very heavy to lift in and out of the car."

When Kimberly and Gabe are finally able to get the wheelchair in the Chevy Suburban it takes up half of the room in the car. Kimberly said its not just Trinity who has to ride in the Suburban, but her two siblings too, Joshua, 8, and Cassidy, 9.

During the last fundraiser, the Kellums were able to raise $2,000, but they had to declare bankruptcy and close that account. Kimberly said those who donated to the cause last time can rest assured that the $2,000 is still in the family's possession and will be used for the wheel-chair accessible van. Kimberly figured it will cost about $17,000 to purchase a wheel-chair accessible van. This van would allow a way for the family to transport Trinity safely medical appointments and community events.

This is why the Kellums are asking the community to support the a pizza fundraiser, which will take place tonight, Wednesday, from 4 p.m. to 8 p.m. at both Green River and Rock Springs Domino's locations. During this time, Dominos will donate 20 percent of all of its proceeds to Trinity. Both carry out and delivery orders will apply.

 

Reader Comments
(0)

 
 

Powered by ROAR Online Publication Software from Lions Light Corporation
© Copyright 2018