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Valley woman's struggle with son's rare birth defect

Published On: Feb 08 2014 06:02:14 PM CST

Valley woman's struggle with son's rare birth defect.  Natalie Brunell reports.


Jennifer Gutierrez's son, Angel, needs round-the-clock care. As a single mother, taking care of him is a full-time job.

"I know people my age have kids and they take them to the park, they take them to do certain things. I can't do that," Gutierrez said.

Doctors had a difficult time delivering Angel.  His limbs were deformed and practically useless from a rare birth defect called Arthrogryposis.

"Problems with the femurs, he has no muscles, he has weak tendons and he can't stand. He can't move his legs, he really can't do anything on his own," Gutierrez said. 

Every morning, Gutierrez places "Magic Arms" around Angel's delicate upper body for exercises. With his condition, he can't lift up his own arms. The exoskeleton supports his back and helps him move. 

"When he starts doing things, like when he grabs certain things he gets really excited. He wants me to see he's doing things.  When he grabs a toy it's a really big deal for him," Gutierrez said.  

The apparatus even helps Angel to do something he loves, dance. A shining example this rare condition hasn't harmed Angel's spirit.

"As of right now I really don't think he understands what's going on. I think once he starts asking questions that's when it's really tough," Gutierrez said. 

The Magic Arms cost $7,000.  They're not covered under Medi-Cal so Variety the Children's Charity of the Desert covered all the expenses.  But he will soon outgrow the arms and need a new set. 

He also needs a wheelchair, but so far there hasn't been enough money to help Angel get one. 

"We're trying to figure out where there's something to help him, so we can take him to make his life easier," Gutierrez said. 

Doctors won't say if Angel will ever be able to stand on his own two feet.

"They say there's a chance. It just depends how he develops.  But they won't say, they don't want to tell me he's going to walk because if it doesn't happen," Gutierrez said. 

Like most parents, Gutierrez constantly wishes she could be in two places at once: both at work and and at home to take care of Angel.  

I don't want to leave him at a sitter's to get a job because I feel like they're not familiar with what he needs," Gutierrez said. 

But among her many fears, the biggest is when she's no longer there to help.  

"It's just stressful because I want to do something and I want to save up for him if anything happens so he doesn't have to worry about anything.  I know it's going to be hard for him to get a job or do certain things, drive," Gutierrez said. 

Until that day comes, Gutierrez will be with her Angel every step of the way.

If you'd like to help angel and his family, you can contact Variety the Children's Charity at (760) 773-9800.