BAKERSFIELD, Calif. (KGET) – Three years ago we introduced you to baby Nathan Aguirre, who was diagnosed with Cutis Laxa Type 3. That’s a rare genetic disorder that causes seizures, muscle spasms, and cataracts and there are no cures or treatments.
The parents of the 3-year-old say his care isn’t getting easier, but they’re managing since having to leave their jobs to take care of Nathan full-time.
“I just have those days where I break down,” said Pamela Aguirre, Nathan’s mom. “I mean my job is to be their mom and that is what I am going to do.”
Generous donors have helped them through the past three years since they also have to care for an autistic 13-year-old. Both parents are now kick-starting efforts to build a local community to guide special needs families thru the often lonely journey of having a kid with special needs.
“Knowing now what it is like for us now we have drawn other families with different cases,” said Armando Martinez, Nathan’s dad. “They tell us ‘ we feel that too, ‘I know what it’s like too.”
According to rare diseases.org, the disease has been reported in only 400 families worldwide. Through social media, Nathan’s parents also have found others living with Cutis Laxa as well as continued spreading the word about the rare disease.
A fundraiser organized by various small businesses will take place Sunday at Destiny Banquet Hall located at 254 White Lane from 12 to 4 p.m.