Miracle baby loses battle with rare genetic disorder
Fri, 20 Sep 2013 04:13:36 GMT —
Even before birth, Aiyanna Hope Vega proved to be a fighter.
"We knew she was sick because she had extra fluids and she had bleeding in the brain," her father Jonathan Vega said.
Diagnosed with a genetic disorder known as Edwards Syndrome, doctors didn't give her long to live.
"It's like having an extra chromosome," Jonathan said. She was supposed to pass away at birth."
But this little angel defied the odds.
"It was a blessing," he said. "It was a blessing."
Aiyanna met her brother and sister in April.
The family formed a powerful bond.
"We just try to keep up and not think about it cause to us she wasn't sick," Jonathan said.
For 5 months and 4 days she gave everyone, including her father, a love they'll never forget.
Aiyanna passed away on Saturday.
Jonathan's former boss and friend Donna Torrez learned about his financial struggles with funeral costs and nominated him for the Pay it 4Ward prize.
"I just wanted to help you to ease the pain a little bit," she told him at Dairy Queen off North Sunshine 77 in Harlingen where he works. "You're so strong. You have a lot of strength for your other kids and for your wife and I admire that. So I thought I could help you in a little way with the job you have. I want to Pay it 4Ward."
Karen Gonzalez with FNB Insurance Agency is standing by to help with the surprise.
"I just want to say how incredibly sorry we are for your loss," she told them. "No parent should ever have to go through what you're going through. And you have a friend here who's been so inspired by your strength that she wanted to show you that in some small way and so do we. So on behalf of FNB Insurance and Action 4 News here's $400."Jonathan flashes a smile and simply says, "Thank you."
He explains to Action 4's Ryan Wolf how things are getting a little easier since the passing.
"At first it was hard for me to look at the sky and talk to her but it's been going a lot better," he said.
He keeps Aiyanna's memory around his neck with jewelry that contains some of her ashes.
"She's in heaven," he explained. "She's an angel. She's looking down on us."
His advice to other parents faced with a similar situation is to never give up.
"I have 3 kids and just because I lost 1 doesn't mean I'm going to fall down and not get back up," he said. "I have to be there for my other 2 kids no matter what."
That spirit is something Donna says everyone can all learn from.
"Pay it 4Ward!" Jonathan said.
He plans to use his Pay it 4Ward prize to purchase a special urn for his daughter's ashes.