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Maren’s Story: A little girl with a rare disorder gets a big win

Maren’s Story: A little girl with a rare disorder gets a big win

by Shannon Klingman, M.D.

We all want to make our mark on the world… When I started Lume, I had a lofty goal of changing people’s lives.

That may sound like a stretch, since Lume is a deodorant. But, in my practice as a gynecologist, I saw how odor concerns could affect women’s confidence. It’s a very sensitive topic, and one a lot of us are embarrassed to talk about. We have enough to worry about in our day-to-day lives, and odor shouldn’t have to be one of them!

I had a feeling that Lume could change people’s lives for the better but didn’t realize quite how life-changing it could be.

Shortly after we launched in October 2017, I received a message from Honey Stecken, the mother of 5-year-old Maren. What I was about to read would swell my heart and plant my feet straight on the ground:

“This is an amazing find! I ordered this and tried it on myself. The cream is amazingly effective. However, I wasn’t trying Lume out for me, I was trying it out on behalf of my 5 year old daughter. She has a rare genetic condition in which her medicines cause her to have…well, a cloud of embarrassing odor around her. The science described in your research work hit home with me as very familiar. Many kids with metabolic diseases have issues with odor. In our rare disease community there are fragile children who are even bullied and excluded because of it. It is certainly a longstanding issue and topic of conversation. Since trying Lume, the smell cannot be detected. I feel like my daughter and my family have gained a piece of normalcy and dignity back. I feel like other parents in our disease community are going to appreciate this so much. Thank you so much for Lume!”

Maren was diagnosed with a rare metabolic condition called propionic acidemia when she was just two weeks old. Her condition requires a life-saving amino acid supplement called L-carnitine. Without it, her body isn't able to break down protein, which can result in brain damage and organ failure.

Unfortunately, this life-saving supplement also has one big side effect that’s hard to ignore: It causes her to smell like rotten fish. Honey described it as, “walking into a fresh seafood market.” As you can imagine, this caused people to look twice and shift away from her.

Maren’s parents tried everything. They used fisherman’s soap. They sent wipes, body sprays, and extra clothes with her to school. They tried bathing her multiple times a day.

Doctors who were caring for Maren had nothing to offer, either. Clinical trials she had participated in led to the same question: Is there any way to control the odor?

The answer was always, “No.”

While they were looking for a solution for the odor, her parents must have wondered: Would she enjoy her first day of school? Can she sit with other kids at lunch? Will she be able to go on field trips with the rest of her class? Would she be invited to sleepovers? Would anyone come to her birthday party?

When I received the message from Honey, I immediately asked her if there was a phone number I could call her at. We talked on the phone for over 90 minutes. I remember standing outside watching my children play while we talked that unseasonably warm, early fall evening. It was so meaningful to me to hear Maren’s story. I wanted to reach through the phone and hug her!

As mothers, Honey and I connected over the helpless feeling of being unable to spare our children suffering. I listened as she shared with me that she and her husband considered lowering the amount of L-carnitine they gave Maren to improve her quality of life by minimizing the fishy smell.

These types of rare conditions, also called “orphan diseases,” seldom get enough attention or funding because so few people are affected. There was little hope that anything would be able to solve this odor problem.

This not only affected Maren, but also her entire family. Slowly, friends stopped inviting them over for play dates and get-togethers. It was difficult to leave the house to go out to eat, do an activity as a family, or even run errands. Everyone in her family became more isolated.

Maren began kindergarten in September of 2017, and we launched Lume Deodorant for Underarms & Private Parts one month later. Honey found our website through a support group for people with metabolic disorders and their families called “The Organic Acidemia Association.” The leader of the support group found Lume to be effective for the odor her daughter experienced from a similar condition.

Honey tried it for herself, and it worked. She tried it for Maren, and it worked!

As a scientist and problem-solver, I felt validated by Maren’s story. As a mother, I too have known the helpless feeling of not being able to heal our children, and I felt grateful that something I became so passionate about would change the trajectory of Maren’s entire life. As a physician, I was frustrated that nobody had thought of this before now and we allow conditions to go unfunded because they are, to quote Honey, “Too rare to care.”

It felt like Christmas. I was full of hope and wanted to meet Maren and her family.

My creative director, John Magnoski, and I traveled to Colorado to tell their story. We flew into Denver, then drove through the mountains for three hours to arrive in the rural mountain town of South Fork, Colorado.

Maren now has a community of people that provided her with a “do-over” in a new kindergarten classroom. She is a typical kid in more ways than not, and Lume will continue to allow her to have experiences that maybe she wouldn’t have had otherwise. It was one piece of a puzzle that fell into place for her just at the right time.

This is a BIG social win for Maren and a validating and humbling win for me as the inventor of Lume. It came full circle for me in that moment Maren’s mom and I spoke.

I am so grateful for the opportunity to contribute to the increased confidence so many like Maren will now have. Lume has removed this social bane from her existence, and that is pretty amazing.

Shannon Klingman, M.D.

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