COTTAGE GROVE (WKOW) — Asher Steinhauer came into the world on February 2, 2015 with a rare congenital heart defect.
“He was diagnosed when I was 20 weeks pregnant with a congenital heart defect called Hypoplastic Right Heart Syndrome and what that basically means is the right side of his heart was underdeveloped,” says his mom, Angela. “On day 8 of life, he underwent his first open heart surgery.”
The complications that followed turned Angela and her husband Tony’s world, upside down.
“One of the nurses came rushing in and said he went into heart failure,” she says. “We fought for him for two more weeks. It got to the point where he couldn’t fight anymore and we had to let him go.”
Now, Asher’s parents and three siblings reflect on the brave battle he fought.
“Even though his life was so short, he really made this strong impact and in my grieving I wanted to keep that going,” says Angela.
So, the family started Asher’s Heart Fund.
“The first fundraiser we did, we raised somewhere around $5,000,” says Tony. “The second fundraiser we raised around $12,000. The third one was $17,000 and then this last one was over $21,000.”
With that money, they funded a program at the American Family Children’s Hospital that brought them great comfort during Asher’s life, called Beads of Courage.
“You don’t realize how much these kids go through,” says Tony. “But, when you see the beads, you realize that, ‘This kid’s a fighter.”
Children in the NICU and heart patients in the PICU get a special bead for each procedure or milestone in their treatment, altogether creating a beautiful display of their courage.
“It’s so rewarding to us to get to meet families and to see that they have this little piece of our son.”
The Steinhauers also give those families stuck in the NICU on Christmas, gifts and care packages. And they help with anything else families might need throughout the year.
“We went through it . We understand it. We understand the things you don’t have, so the hospital can draw money (from the fund) to purchase items for families to take home,” says Tony.
Asher’s Heart Fund also sponsors two nurses for a conference each year, for continuing education on congenital heart defects.
“We wanted to do something that was impactful,” says Angela. “One thing that we felt from Asher’s life is that he touched so many people.”
And these simple gifts, have so much meaning.
“We wanted his legacy to just keep going,” says Tony. “We’re just trying to do our part and give back, it’s all for him.”
If you’d like to donate to Asher’s Heart Fund, click here.