Stem cell treatment more than miracle

barbara

Pioneer Founding member
HALEY JONES FINDS HOPE
by Elysia Conner

http://casperjournal.com/community/article_bd8ac0cb-56d4-5d05-9a57-6edab6048109.html

Haley had never read a book before by choice. When she had to read for school, she wanted to be done with it as soon as possible.

But when the 21-year-old picked up her sister’s copy of “The Hunger Games” in August, she was hooked. That was a month after she’d undergone a stem cell treatment for effects of a massive stroke she’d survived at birth.

The treatment was targeted to her epilepsy and cerebral palsy, and has helped. But Haley was told she also might see some mental improvements, like reading comprehension and attention.

Reading suddenly was fun for the first time in her life, Haley said. She finished the two sequels in three weeks and started the “50 Shades” series.

“Hey, at least I’m still reading,” she said to her mother’s mock chagrin over the racy content.

That Haley can read at all is remarkable, said her mother, Tina Jones. The stroke destroyed half of the right side of her brain, she said. Doctors at first thought she’d be profoundly retarded and might never walk or talk.

She beat the odds, but continues to struggle. Today Haley copes with occasional seizures — even with a high medication dose, spastic and weak muscles on the left side of her body and cognitive issues including visual and spatial processing difficulties, Tina said. Her epilepsy medication also exacerbates her short term memory and attention issues, and causes dizziness and headaches.

In July, Haley received a stem cell procedure at a clinic in Mission Viejo, Calif. Her seizures have become less severe, though she hasn’t been able to reduce her medication.

Haley and her family hope an additional and more intensive stem cell treatment her doctor recommended will greatly improve, if not cure, her epilepsy and improve her other disabilities, said her father, Jim Jones. None of the stem cell treatments are covered by insurance, so the family is raising money to help with costs.

Her doctor has seen stem cells cure epileptic patients and improve many kinds of disabilities, Jim said. With how Haley has responded, he’s optimistic about her treatment on Dec. 3

“Just to be able to follow the story and comprehend what goes on, that’s what we saw was a giant improvement with basically just a small dose,” Jim said.

Haley wants to be able to drive and have a job, maybe as a hostess at a restaurant, she said. She’s felt frustration at being left behind in those ways while friends moved on to college, marriage and work. Any improvement in her disabilities, especially with gaining function of her left hand, will open more job options for her, she said.

Her recent strides already have made her think about more possibilities, she said.

“I’ve always been able to read but I’ve never had the desire to go on to the next series,” Haley said. “That’s the difference between reading and going to college, you know?”

Despite her difficulties, Haley’s known for her cheerful, determined nature and sense of humor.

“She just has an incredible positive attitude, and it’s inspiring in a way,” said Dino Wenino, a family friend who’s known her since she was a child. He’s given her free massage therapy sessions at his practice to help with the muscle constriction of cerebral palsy and attended a recent fundraiser at their home.

Tina said she’s grateful for the support they’ve have been given over the years and with the recent fundraising.

The family will continue to do everything they can to increase her potential, Tina said. She’s received physical and occupational therapies and early intervention for cognition since she was born, Tina said. She’s had surgeries to improve her ability to walk and use the left arm, which used to be drawn toward her body with her hand clenched, Tina said. She’s also received hyperbaric chamber therapy, the first cutting-edge treatment her family pursued years before they explored stem cells, Tina said.

“I believe that she’s going to improve significantly with just the stem cells, but we’re going to hedge all our bets,” Tina said. “We’re going to just keep at it, because I want her to get absolutely as far as she can. What I want for her is more success, independence and abilities.”

Haley and Tina also said they feel lucky she’s already come further than anyone dreamed. She graduated from high school a semester early. She’s been able to enjoy hanging out with friends, spending time with her three dogs, shopping and traveling. Tina believes the stem cells will continue to increase her quality of life as well and help her be more independent.

Besides reading for fun, Haley’s recently been able to better take in her surroundings. She’s visited Casper Mountain every fall, but this was the first time she marveled at the colors, for instance.

Her mother thought she’d have to help her during a painting night at Artisan Alley recently, but Haley followed the directions and completed a picture by herself.

“She’s also a little more smart-mouthed,” her mother said. That’s how she should be at her age, she added.

“It’s time for me to have some independence on some things. It’s because I’m getting older and I should be able to make my own decisions,” Haley said. “It’s a journey, that’s for sure.”

For more about Haley and the fundraising effort, visit www.gofundme.com/ef9oco.
 
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