Navigating Life with Purpose: Connie's Journey as a Mother, Advocate, and Changemaker

One of the most prominent voices in the world of assistive technology and Caregiving is that of Constanze Werdermann, better known as Connie. A mother, global PR and social media manager, and co-founder of FiNiFuchs, Connie’s journey is deeply personal and profoundly inspiring. She's a fierce advocate and warrior for accessibility and inclusion.

At the heart of her story is her daughter, Nike, a 12-year-old with CDKL5 deficiency syndrome—a rare genetic disorder characterized by epilepsy, severe developmental delays, blindness, and limited motor function. But if you ask Connie, she wouldn’t define Nike by her medical condition. Instead, she calls her daughter a “little sunshine,” a confident, joyful soul who brightens the lives of those around her. Yet, behind every smile and every moment of laughter, there is an untold struggle—a battle against bureaucracy, a constant search for the right assistive devices, and an unyielding determination to provide Nike with the best possible quality of life.

The Challenges of Raising a Child with a Rare Disease

Raising any child is a full-time job, but raising a child with complex medical needs is an entirely different reality. It’s exhausting, emotionally taxing, and—most frustratingly—filled with bureaucratic obstacles.

Nike’s needs are extensive. She requires help with everything—feeding, dressing, washing, using the toilet, showering, and moving from place to place. Each of these daily activities depends on specialized equipment: a wheelchair, an adapted car, a toilet stool, a lift, a special bed. But finding the right aids is an ordeal that extends far beyond simply walking into a store and making a purchase.

For example, Nike has been waiting for a new wheelchair for nine months. It should be a straightforward process—she has outgrown her old one, so a new one should be provided. But in Germany, despite its well-developed healthcare system, nothing is that simple. The process involves multiple steps: a doctor’s appointment, an evaluation, a medical supply shop visit, cost estimates, insurance approvals, further evaluations, manufacturing delays, and then finally, the long-awaited delivery.

By the time the wheelchair arrives, Nike has already grown. The cycle repeats.

“It should be a natural thing that she gets the next wheelchair when she needs it,” Connie says. “But instead, it takes months, endless paperwork, and constant fighting with insurance companies to prove that she needs what she obviously needs.”

The result? Nike has been forced to sit in a wheelchair that is far too small for nearly a year, leading to scoliosis and further health complications.

The Struggle for Accessibility: More Than Just a Wheelchair Problem

Connie’s battle extends beyond medical bureaucracy—it’s also about accessibility in daily life.

Despite Germany's reputation for efficiency and innovation, it still has a long way to go in terms of accessibility. Connie's hometown is a case in point.

“I probably live in one of the least accessible towns in Germany,” she says. “Sidewalks are not made for people with wheels. Public transport is hardly accessible. Most shops don’t have ramps. Even my daughter’s pediatrician’s office isn’t accessible—I have to carry her up a flight of dangerous stairs every time we go.”

This inaccessibility doesn’t just impact Nike—it affects the entire family.

“If Nike can’t enter a shop, I can’t enter a shop. If a restaurant isn’t wheelchair-friendly, our whole family is excluded. It’s not just about her—it’s about all of us.”

Even in a country with universal healthcare, accessibility remains an afterthought, leaving families like Connie’s struggling to navigate a world that simply isn’t built for them.

FiNiFuchs: Turning Frustration into a Solution

The difficulties of finding the right assistive products led Connie to co-found FiNiFuchs, a revolutionary online platform designed to help families navigate the confusing world of medical aids.

It all started with a simple phone call between two mothers; Connie and Janine. Both were looking for the right stroller for their children. Connie had been struggling, whereas Janine had trusted advisors to guide her. They asked themselves: What if there was a platform that listed all available assistive products, allowing parents to compare options and share reviews?

That idea turned into FiNiFuchs, a “Wikipedia for special needs products.” Over the past seven years, the platform has grown to include more than 1,600 items—wheelchairs, strollers, standers, adapted bikes, and much more. It operates as a 24/7 digital trade show, allowing parents to explore options, read reviews, and make informed decisions without the frustration of hunting down information across multiple manufacturers.

The impact has been global. FiNiFuchs started in Germany but has since expanded internationally, helping families from Indonesia to Nigeria, from Canada to the UAE.

“Parents shouldn’t have to rely on what one medical supply store happens to have in stock,” Connie says. “They deserve to know all their options.”

One of the most important lessons Connie has learned through this journey is that parents often have to become product designers themselves.

Innovation often comes from necessity, and FiNiFuchs is proof of that.

The Emotional Toll—and the Strength That Comes With It

Despite all the challenges, Connie wouldn’t trade her life with Nike for anything.

“The hardest part of this journey isn’t my daughter. The hardest part is the bureaucracy,” she says. “Nike is not a challenge. She’s a child with special talents, just like any other child. The real challenge is the endless paperwork, the medical battles, the insurance fights, and the lack of accessibility.”

Still, she finds immense joy in the small, everyday moments—watching Nike’s confidence grow, seeing her excitement at trade shows, or simply witnessing the impact she has on those around her.

“Nike has this incredible ability to calm people. She lets them hug her, and then, when she’s had enough, she gently pushes them away,” Connie says with a laugh. “People are addicted to her. She gives so much just by being herself.”

This perspective is what drives Connie forward. She knows the world isn’t perfect, but she also knows that change is possible—and she’s determined to be a part of that change.

Lessons for Other Caregivers: Advice from Connie

For other parents navigating similar challenges, Connie has one crucial piece of advice: Find your people.

“This is where social media is actually great,” she says. “It allows you to connect with people in similar situations. 

“Having a support system of parents who truly understand what you’re going through makes all the difference.”

She also urges manufacturers to embrace user-centered design—actually listening to the people who will be using their products.

“Why aren’t manufacturers asking us what we need? Why aren’t they designing with our children in mind? We have to push for design thinking in assistive technology.”

And finally, she reminds caregivers to fight for what their children deserve.

“Yes, the system is slow. Yes, the bureaucracy is overwhelming. But our kids deserve the best. We have to keep pushing.”

Looking Ahead: A Future of Possibilities

The road ahead is still filled with challenges. There are still battles to fight—against outdated policies, against inaccessible spaces, against broken healthcare systems. But Connie remains hopeful.

As the Dalai Lama once said:

“Look at situations from all angles, and you will become more open.”

For Connie, that openness is the key to change. By sharing her story, by building FiNiFuchs, and by continuing to fight for accessibility and inclusion, she is paving the way for a world where no parent has to struggle the way she did.

And most importantly—she is ensuring that Nike, her little sunshine, has every opportunity to shine.

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