Success Story: Sabrina Gets What She Needs for Her Swollen Legs

Sabrina Steward, 23, of Quincy, IL, has had more than 50 surgeries related to her spina bifida. In 2013, she was in the process of being evaluated for another tethered spinal cord surgery when she had a shunt malfunction, was placed on a ventilator and spent 20 days in a coma.

Sabrina Steward with her cat Matayo, a/k/a Potato, at home in Quincy, Illinois.

Sabrina Steward with her cat Matayo, a/k/a Potato, at home in Quincy, Illinois.

As a result of not being able to get surgery on her tethered cord, she lost her ability to walk. After several years, physical therapy was successful in re-establishing a connection between her brain and legs. That was great. But when she started walking, her legs became dangerously swollen.

Recommendations for lower extremity edema typically include only limb elevation and use of compression garments.*  She tried compression socks, but they didn’t alleviate the swelling. Her vascular surgeon then prescribed a state-of-the-art compression therapy product or pneumatic compressor. The prescription was for the Lympha Press®, which squeezes out of her legs the fluid that makes them swollen. 

That’s when Sabrina’s clinical problems were joined by insurance woes.  She was told that Medicaid of Illinois didn’t cover the Lympha Press, which costs nearly $2,000, a price tag beyond Sabrina’s ability to pay.

But Sabrina was not to be denied. In April, she solicited the help of the Illinois Spina Bifida Association (ISBA). Its executive director Matt Larsen listened to Sabrina’s story and set out to help. After a half dozen phone calls to medical suppliers in Illinois, all of whom repeated what Sabrina had been told that Lympha Press was not approved for Medicaid reimbursement, Matt reached out to the US distributor of Lympha Press, Patriot Medical, in West Chester, PA. In turn, it contacted the customer service department one of its associates, Medical Solutions Supplier (MSS), also outside Philadelphia.

“That’s when our team went to work on Sabrina’s behalf,” says Brenda J. Viola, MSS’s director of marketing and public relations. “Our goal is to obtain approval through patient’s insurance by becoming their advocates and fully understanding their clinical case. In reviewing Sabrina’s case, we learned that what her doctor had been told about no insurance coverage for the pump was accurate in terms of spina bifida not being a covered diagnosis for the pump. But the diagnosis of lymphedema is. We knew Sabrina needed the pump or her surgeon wouldn’t have prescribed it.”

The result: MSS gave Matt the necessary Illinois Medicaid codes and supplier information for the vascular surgeon to get Sabrina the state-of-the-art medical equipment.

When Sabrina got her Lympha Press in May, “it took the fluid right out my legs,” she says. “My legs now are skinnier.  I can wear clothes and shoes that I couldn’t with my swollen legs. I’m grateful to all the people who helped me get the Lympha Press.”

Adds Sabrina: “The moral of this story is to never give up fighting for what you need.  Learn what you’re entitled to receive.  And remember that the ISBA is there to help.”

“It’s always important to work with durable medical equipment companies that ask questions on patients’ behalf. That’s what patient advocacy is all about,” advises Viola.

*LYMPH Link Article Reprint, Volume 17, No. 1 January~March 2005

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The McHenry County Community Foundation Awards Grant to ISBA at August Ceremony

The McHenry County Community Foundation has named the Illinois Spina Bifida Association as a recipient of a $4,000 grant at the Foundation’s Grants Luncheon held August 22, 2017 at Boulder Ridge Country Club, Lake in The Hills, Illinois.  The Illinois Spina Bifida Association will use the grant money for its Community-Clinic Connection program, which provides community-based support and coaching services to increase family resilience, health quality of life, and the independence of children and adults living with spina bifida.

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The Illinois Spina Bifida Association is among 34 health and human services organizations serving McHenry County that received grants totaling $330,000 from the Foundation in this granting cycle.

The McHenry County Community Foundation connects the generosity of local donors with community needs through grants to organizations working to create a better quality of life throughout the county.

This brings the Foundation’s annual grant distributions for the 2017-18 fiscal year to $1.7 million – this highest in the organization’s 16 year history. For the past three years, the Foundation has provided funds to more than 70 organizations, protecting the human services safety net for those hardest hit by the economy, developing new audiences to sustain our county’s arts and education organizations, and improving conditions for healthy and active lifestyles.

“I’d like to congratulate the Illinois Spina Bifida Association for their work in our community,” said Robin Doeden, Executive Director of The McHenry County Community Foundation.

“The ultimate goal of the Foundation is to ensure that financial support from our generous donors goes to the most deserving nonprofits in our county. The Illinois Spina Bifida Association and others receiving grants today are doing great work to enrich the lives of McHenry County residents. The Foundation is honored to partner with them in the coming year,” added Doeden.

Foundation grant recipients underwent a thorough application and review process and demonstrated their nonprofit’s needs, goals, reach and potential to members of the Foundation’s grant committee.

“We are grateful to the generosity and leadership of the McHenry County Community Foundation and its donors,” said Matt Larsen, Executive Director of the Illinois Spina Bifida Association. “We look forward to expanding our services in McHenry County for children, adults, and families living with spina bifida.”  

The McHenry County Community Foundation distributes funds to Health and Human Services organizations in the early fall and awards Arts, Education, Environment and Economic Opportunity grants in the spring.  Local nonprofits interested in applying for funds should visit www.mccfdn.org or call Margaret Miller at 815.338.GIVE (4483).

McHenry County residents seeking to make a difference locally by contributing to The McHenry County Community Foundation can contact Robin Doeden at robin@mccfdn.org or call 815.338.GIVE (4483) or visit www.mccfdn.org.

About The McHenry County Community Foundation

The McHenry County Community Foundation is a trusted community leader, sponsor and participant encouraging philanthropy and welcoming partnerships to create a positive difference in the quality of life in all of McHenry County.

The McHenry County Community Foundation is a tax-exempt public charity created by and for the people of McHenry County.  We work with you to help you fulfill your charitable interests and goals.  We play a key role in addressing community needs, opportunities and dreams – now and in the future – in order to help make giving as effective as possible.

For more information please contact The Foundation at 815.338.GIVE (4483) or connect with us: www.mccfdn.org

About the Illinois Spina Bifida Association

The Illinois Spina Bifida Association (ISBA) works to improve the quality of life of children, adults, and families living with spina bifida, one of the most common, permanently-disabling birth defects in the U.S. The Illinois Spina Bifida Association is a 501(c)(3) nonprofit organization founded in 1969 by a group of dedicated parents. ISBA works to accomplish its mission with a three-part program strategy:

  • Promote skills development and independence;
  • Improve family resilience and access to resources through networks of outreach and education; and
  • Provide targeted financial assistance.

Visit isupport.i-sba.org to help make ISBA's work possible.