The past two years have been very difficult for the Simmons family from Burkeville. Their daughter, Carli, was diagnosed with a brain tumor when she was 15-months-old and has had major complications as a result of her treatment. Through it all, with the help of the communities of Jasper and Burkeville, the Simmons family has taken the love they have been shown and they are spreading it to others who are fighting similar battles.
Little Carli has been in the hospital almost two of the three years that she's been alive. Her mother Valerie says Carli is a child everyone is drawn to.
"Smiled all the time, happy, always happy people see her pictures from before that's their comment. She was always smiling," said Carli's mother.
When Carli was 15-months-old she was diagnosed with a tumor called Atypical Territory Raptoid Tumor abbreviated, ATRT.
"It's a rare but very aggressive tumor we tend to see in younger children. It's a tumor that up until a decade ago was considered not curable," said Dr. Jack Su, Carli's Oncologist.
Valerie tells 12 News, "She had two rounds of chemo, which is traditional chemo. She had six weeks of radiation, proton radiation, and three bone marrow transplants."
Carli was supposed to be finished with her treatment in October 2011, But her parents noticed something wasn't right.
"She was almost presenting the same symptoms of the tumor. She wasn't walking correctly, couldn't feed herself anymore, didn't talk right," said Carli's mother.
What everyone thought would cure Carli, doctors believe, actually caused more complications called radiation necrosis. The radiation had not only killed the tumor, doctors believe, it had damaged part of Carli's brain.
"The place of the necrosis happened in her brain stem which is the area that controls everything . It's almost the CPU of your computer, so to speak. It controls your heart rate, breathing, respiratory rate, emotions, awakeness, that type of thing," said Dr. Su.
It's a condition that is considered medically irreversible.
"We just love her as much as we can and let her know we're here. To what level of understanding she has, I don't know. We don't turn a blind eye to what's going on with Carli. We're realistic about that. But there's always hope and there's always hope in a miracle," said Carli's mother.
Throughout Carlis treatment the Simmons family has tried to keep life as normal as possible. But the fight for Caril's life required a change in life for the entire Simmons family.
"Our focus is Carli and our life revolves around her. When you are put into the cancer world, it consumes you," said Carli's mother.
That world has taken them from their home in Burkeville to Houston to be closer to Carli's doctors and the hospital. While Texas Children's Hospital doctors and nurses do everything they can to help Carli, at home the entire community is coming together to help the family during this difficult time because everyone knows it takes a village to raise a child.
"How could you make it without that support?" asked Valerie.
From the beginning there were cards and gifts, and even financial support.
The community organized a trail ride to help the Simmons family along their journey. Part of that journey is that the Simmons family created a foundation called Carli's Butterfly W.I.S.H.E.S. foundation, whose goal it is to help other families in their battles with cancer, specifically those on the 7th floor in the progressive care unit at Texas Children's hospital. For Halloween Carli and her family dressed up and passed out candy.
Ashlee Titterington with Texas Children's Hospital works with Valerie on the foundation to figure out the needs the floor has.
"For Thanksgiving she brought lunch for the families," said Titterington.
The community's help the foundation provided Christmas presents and a meal for them as well.
Carli is out of the hospital and her family has been able to move into an apartment in Houston that was provided by His Grace Foundation. But they can't come home to Burkeville until there are renovations to their house to accommodate Carli's needs. Supporters have reached out to a home makeover show, hoping for some help with that for the family. They are also planning a barrel racing event in October to raise money.
If you would like to support Carli's Butterfly Wishes Foundation, click on the links we like tab and we have a link to their web site.
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