Spina Bifida Financial Support

Spina bifida is a lifelong condition that affects thousands of families across the U.S. The emotional and financial challenges that come with ongoing medical care, therapies, and support services can be overwhelming.

Understanding the true costs of care, from surgeries to everyday medical needs, is the first step toward finding the help and resources your family needs to navigate the journey. Connect with Help Hope Live and learn about fundraising options that can make a significant difference in managing the emotional and financial burdens of spina bifida.

Average Cost of Treatments for Babies with Spina Bifida

• Hospital costs for a baby born with spina bifida were about $21,900 (ranging up to $1,350,700) in the first year of life.
• About 18% of babies with spina bifida had more than three hospital stays in their first year of life.
  • • Median number of hospital stays per infant with spina bifida: 2 (range: 1-12 stays)
    • Median number of total days in the hospital (for hospital stays started in the first year of life): 14 (range: 0-476 days)
• Infants who had private insurance only or who had a mix of public and private insurance had fewer hospital stays than infants who had public insurance only.

Average Costs for Adults with Spina Bifida

Adults with spina bifida may face a wide range of medical and related expenses to maintain their health, mobility, and independence as they age. Common expenses include:

• Health insurance premiums, deductibles, and co-payments
• Medications
• Travel expenses for rehabilitation and treatment
• Relocation or moving expenses related to the diagnosis (such as in the case of moving to be closer to a rehabilitation center or hospital for treatment)
• Temporary housing due to relocation
• Mileage, tolls, and parking fees for visits to rehabilitation center or hospital
• Specialized wheelchairs and other durable medical equipment
• Specially equipped vans and durable medical equipment
• Home modification related to the diagnosis
• Home health care services
• Assistive technology
• Physical therapy and vocational rehabilitation
• Experimental treatments

How Much Does Spina Bifida Care Cost?

The costs of treating and managing spina bifida can be overwhelming for families. Spina bifida is a complex condition that often requires lifelong medical care, surgeries, equipment, rehabilitation, and support services. Navigating the financial challenges of spina bifida is difficult, and insurance rarely covers everything.

Families managing spina bifida may face many out-of-pocket costs, including:

• Health insurance premiums, deductibles, and co-pays
• Multiple surgeries and hospitalizations
• Regular therapies (physical, occupational, or speech therapy)
• Assistive mobility devices and medical equipment
• Home modifications for accessibility
• Medical travel and temporary lodging for appointments and surgeries
• Ongoing medications
• Respite care and caregiving costs, including lost income

How Much Does Spina Bifida Treatment Cost with Insurance?

Even with insurance, many essential expenses—like specialized therapies, equipment, and home modifications—may not be fully covered.

Fundraising for Spina Bifida Costs

At Help Hope Live, we help families living with spina bifida access the financial support they need. Through trusted,  community-based medical fundraising, our nonprofit empowers families to raise funds for the critical medical and related expenses that insurance does not cover. If you need help with spina bifida costs, start a campaign or support a family in need today.

Turn to Help Hope Live for Spina Bifida Financial Support

Establishing greater support for spina bifida patients is one of our goals at Help Hope Live. Through community-based fundraising, our nonprofit organization is dedicated to helping those in need raise funds for medical treatment costs associated with surgery and ongoing support for patients with spina bifida.

How Does Spina Bifida Fundraising Work?

The fundraising process with our nonprofit starts with a few simple steps:

1. Complete a short campaign request at helphopelive.org/get-started/apply
2. We will contact you if community-based fundraising is a possible option
3. You’ll be paired with a Client Services Coordinator
4. Your Coordinator will provide you with one-on-one fundraising help, including personalized materials and guidance on how to rally your community, share your story on social media, reach out to the press, plan in-person or virtual fundraising events, and much more

How Is Help Hope Live Different from GoFundMe?

• Verifying your medical need for complete donor confidence
• Enabling donations that are tax-deductible
• Providing one-on-one fundraising help
• Managing all funds raised to protect your state-based benefits (funds raised are not considered personal income/assets to you)
• Paying bills directly, allowing you to focus on treatment and recovery

We are a nonprofit with more than four decades of fundraising experience and a 4-star Charity Navigator rating.

Does Community-Based Fundraising Work?

Here are a few Help Hope Live fundraising success stories:

Nick Hansberger is a well-known and well-loved member of his community and a hardworking professional with two jobs. Born with spina bifida, Nick has been experiencing deteriorating mobility and independence—by 2021, he was no longer able to walk or operate a vehicle, even with adaptive controls.

As a result of his mobility restrictions, Nick uses his motorized wheelchair to travel the mile-and-a-half to each job, even through inclement weather and physical discomfort.

His community started a fundraising campaign with Help Hope Live to bring reliable transportation within reach for Nick. They have nearly surpassed their first $50,000 fundraising goal in just four months of fundraising.

"Our Help Hope Live Coordinator diligently guided us through the whole process. We raised 114% of our goal."

Paul Buckman was planning to retire when he fell in his bedroom and began living with quadriplegia.

Help Hope Live provided a tax-deductible, secure, and medically verified way for his community to help during a time of overwhelming need. In 2018, his family purchased an accessible van thanks to their fundraising campaign.