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Mom trying to bring awareness to son's condition

Posted at 11:44 PM, Jun 04, 2018
and last updated 2018-06-04 23:48:03-04

LEHIGH ACRES, Fla., -- Alex Pineda, 6,  suffers from a genetic disease called Spinocerebellar Ataxia (SCA) and it keeps him from being able to walk, retain information and communicate clearly. Now, his mom says while the expenses are high, she wants to bring awareness to his cause. 

“I take him outside to play a lot, so he doesn’t stop loving to be alive," said Elizabeth's Pineda, Alex's mom. 

Elizabeth says she used to focus on everything Alex can't do, when he was first diagnosed at just nine months old. Overtime, she's learned to make life more fun for her son, which includes putting up strobe lights in her house. 

SCA is a rare genetic disease. Elizabeth says there's a life expectancy of 10 to 15 years and with at least 40 different types it's difficult to diagnose proper treatment. Which has led the family to put Alex in front of a panel of doctors to diagnose him further. 

“By knowing that, it’s going to help us to find a better treatment plan for him.” 

Elizabeth says Alex has been traumatized by the amount of doctor visits and will spend the upcoming month doing physical therapy for three hours every day. She says the expenses for Alex have gotten high which include a $4,000 wheelchair. 

“He's had five different pairs [of cruches], each about $800 dollars," she said. 

The family is looking to raise at least $30,000 for a new handicapped car and for Alex to get to the doctor's panel. They tell 4 in your corner the actual cost of everything is nearly $60,000 but they hate asking for too much. If you or someone you know would like to donate to Alex's cause, you can find his GoFundMe page.

You can watch Alex's journey here.