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Action News Now Headlines

Family raising money for two-year-old girl suffering from rare condition

Family raising money for two-year-old girl suffering from rare condition

A family's last ditch effort to give their little girl a shot at a normal life. 

"If you're a parent and you had an opportunity to better your child's life, you have to do it," said Sarah Smedley, the mother 2-year-old Sophia.

Sophia was born with a rare condition known as septo-optic dysplasia, or SOD. 

Like many other children, she loves music and her siblings, but every day is a struggle.

"She was born completely blind, she has a growth hormone deficiency and she has to have shots everyday, she has a seizure disorder which she takes medication for, a thyroid condition, and she also has insipidus diabetes," Sarah said.

Now, Sophia's parents are seeking funding for a controversial treatment program in China. 

$40,000 for the possibility of improving that symptoms that come with the disorder.

"Sophia will receive six stem cell treatments over a period of 25 days. She'll have physical therapy and vision therapists, just all kinds of people that will come and work with her," Sarah said.

There are only about 43,000 cases of SOD in the United States, with varying degrees of severity.

Four-year-old Keeley Hayward can see with the help of glasses, and is able to walk using a cane.

"She was never at the point where there was no relief, where she was inconsolable, where she had to be rocked, there was none of that," said Keeley's mother, Kelsey.

For Sophia's parents, just getting her to that point would be priceless.

"Our goal is to change her life. Even if she has a 1% better vision, if she can see shadows, if she can see anything, if she has less seizures, if she doesn't have to take shots everyday, then it's worth it," Sarah said.

To help raise funds for Sophia's treatment, Fat Daddy's BBQ in Redding will donate 20% of its sales this Friday from 11 a.m. to 8 p.m.

There's also a website set up for donations, and a Facebook page for more information. 


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