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Amanda L.

There’s no one like Amanda

“I was born early with a still undiagnosed condition. I have a lack of sensation in my body which has created many other issues such as scoliosis (rods through my entire back), vision damage, hearing loss, limited use of my legs and hands, and am g-tube fed my meals. But despite this, I wake up every day to the challenge and enjoy life.”

Those are Amanda’s words. And this is a glimpse into her life.

When a person is diagnosed with a rare disease, many follow a similar path. It begins with symptoms or regressions that lead to testing. Then comes the doctor appointments, specialists, and maybe even genetic sequencing. This is where many get a name, an answer to the questions they’ve been asking. What is this? What’s happening? What’s next?

Once a diagnosis is made, the families typically look for resources, trying to connect with others who have a similar condition or tracking down support specific to their needs. Even then, the diagnosis isn’t the full story - it’s simply another piece of a puzzle that can help them build a more complete picture. 

So what happens when you don’t have that? What do you do when genetic testing reveals nothing? When the doctors, specialists, and experts are baffled? When you don’t get a diagnosis at all? According to the preeminent experts in their field, there’s no one in the world like Amanda. 

She was just three years old when her parents first started looking for answers. 

“Every time we went to the doctor, they found something else,” said Amanda’s dad, Tom. “We knew it was neurological and that something was likely wrong with her myelination, but no one could put a finger on what was going on.”

“She had vision and hearing issues, then severe scoliosis,” he told us. “She had surgery to place rods in her back from her neck down to her tailbone, and then 18 months later, she had an allergic reaction to the rods and had to have them removed. But the biggest thing is that she feels no pain and lacks sensation in her limbs.”

Understandably, that’s caused numerous challenges for Amanda. She explained that she would unknowingly scratch or cut her arm and she wouldn’t know about it until her parents saw drops of blood on the carpet and would run to check on her. 

Mobility has been an issue, too, both from her scoliosis and her inability to feel her legs. She even had an operation to extend her hamstrings and straighten her legs, though it only gave her marginal improvement. 

It seems like every time they get close to a diagnosis, it doesn’t quite fit. The Mayo Clinic did genetic testing and found nothing conclusive. One doctor has been especially interested in finding a diagnosis for Amanda. His name is Dr. Klein, and he’s leading research on people who don’t feel pain, both here in the United States and abroad. 

He hasn’t encountered another person who mirrors her symptoms. There’s no one like Amanda.

“Not too long ago, I underwent additional testing,” she told us. “We knew the results likely wouldn’t benefit me, but would have the potential to help others and that’s why I decided to do it. The doc said he would call it the Amanda-Klein disease.”

All of this on its own would make Amanda remarkable. But this is just a small part of the bigger picture. 

She is a force to be reckoned with. Amanda loves participating in community theater, even joining a play with her former service dog. She’s a volunteer for Variety, Aurora Hospice Care, and Dance for All Bodies. 

During the worst of the pandemic, she researched and found online groups to join, making friends all over the country and participating in online wheelchair dance and exercise classes together. 

“Honestly, her social life can be a lot sometimes,” joked her dad, Tom. “God forbid she misses one of her online classes! We’ll be out doing something and she’ll say, ‘C’mon, we have to hurry and get home, I don’t want to be late.’” 

"She is so social,” he said. “But she uses her great personality and persistence to do a lot for other people.” 

There’s no one like Amanda.

As a Wisconsinite, she likes to take advantage of the outdoors as much as possible, even participating in downhill skiing (using a sit-ski) with her two older brothers. Their family lives out in the country with a spacious front yard and she wants to be able to get outside and enjoy it, especially playing with her nephews. 

Unfortunately, it’s getting harder for her parents to push her over uneven terrain in her manual wheelchair. 

So, not long ago, Amanda visited an expo for people with disabilities where she took a test drive in an Action Trackchair, an all-terrain wheelchair that offers the freedom and mobility she was looking for. 

“I really miss the freedom to access outdoor excursions and have social interaction,” Amanda said. “I would like an adaptive UTV to have access to my backyard and neighbors, wildlife, farm acres, and trails to experience outdoor activities with relatives and friends.”

There was just one problem: the price. 

Amanda knew it was beyond the budget for her or her family, so she looked for resources that might be able to help. That’s when she found Chive Charities. 

Through the donations of our generous Green Ribbon Fund members, we were able to fully fund the cost of a new Action Trackchair for a total impact of $22,547. 

“Thank you so much for letting me apply for this grant and for everything you folks do to promote activities for disabled people,” Amanda said. “I’m so thankful to all of you.”

Amanda has a quote on her social pages that reads, “No matter what life gives, you give more back.” It’s not just a clever phrase - it’s a mantra that she lives by each and every day, continually looking for ways to help those around her and to meet every challenge with a smile on her face. 

There’s no one like Amanda. And there’s no one like this community of supporters who continually support recipients like her. Your contributions make a difference. Every $5, $10, or $25 donation you give directly supports a rare medical individual, Veteran, military family, or first responder. No matter what life gives, you give more back. That’s a mantra we can stand behind. Be a part of it with us and DONATE HERE

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