Illinois Families Unite to Help Ethiopian Kids Impacted by Spina Bifida

Illinois families impacted by spina bifida are coming together to help families in Ethiopia impacted by the same birth disorder.

"The mortality rate for children there is 50%. I was just flabbergasted," said Becky Rupnick, whose daughter, Aggie, was born nearly seven years ago with the condition.

Spina bifida is a disorder that involves the incomplete developments of the spine, which can lead to many complications including urological issues.

“We catheterize Aggie every three hours and each time we use a fresh catheter,” Rupnick said.

Advocating for Aggie led Rupnick to learn about other children with her same condition thousands of miles away in Ethiopia.

“In Ethiopia, more than 40,000 pregnancies are affected by this specific problem every year,” said Dr. Yakob Ahmed, PhD, who serves as the country director for Ethiopia with The ReachAnother Foundation, a non-profit that provides health care to the tens of thousands of children every year born with spina bifida.

“A majority of the children even die before they celebrate their 5th birthday,” Dr. Ahmed said.

According to Dr. Ahmed, many of the children die from infections that often start as urinary tract infections due to a lack of access to catheters.

“They have to use one catheter for a week,” said Dr. Ahmed. Compare that to Aggie, who gets a new catheter every three hours.

After meeting Dr. Ahmed, Rupnick volunteered to help immediately.

“I have hundreds of catheters in my closet right now. I can get them to you, and I bet you, if I put out a post, I can get you more,” Rupnick told Dr. Ahmed.

After posting her plea to a private social media page for Illinois families impacted by spina bifida, the donations poured in. Tens of thousands of surplus and sample catheters were dropped on the front porch of Rupnick’s Bartlett home.

“This will help thousands of children,” said Dr. Ahmed.

Access to catheters isn’t just a problem in developing countries. It’s also an issue in Illinois, particularly for those who are uninsured and underinsured.

“It is expensive to go to the bathroom with spina bifida. We want to make sure that cost is not an issue when it comes to living a healthy life,” said Matt Larsen, executive director of the Illinois Spina Bifida Association.

Larsen said the Illinois Spina Bifida Association is working to educate Illinois lawmakers about the cost of catheters.

“The out-of-pocket average costs for someone who has private insurance is about $1,500 a year. For those who are underinsured or uninsured, that can be a real challenge,” said Larsen.

While advocating, they are also fundraising to cover the shipping costs to get the thousands of catheters to Ethiopia.

“We're looking for donations on how we can ship them to Ethiopia to get them to Yakob and to his patients as fast as possible,” Rupnick said.

“The most important thing is taking the catheter out of Chicago and bring it to Ethiopia,” Ahmed said. “Once they get shipped to Ethiopia, I can say we can take care of all that clearance process in a very short amount of time, maybe two days. And then we have eight hospitals that provide care. So the next day, you will find the catheters at the hospitals, being distributed to the children.”

If you are interested in helping get the donations to Ethiopia, click here: Donate Now | Medical Supplies for People with Spina Bifida by Illinois Spina Bifida Association (givelively.org)