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Apr 05

The Polkadot Princess

The Polkadot Princess

Once upon a time, in a far-off land, lived a beautiful and very powerful princess. Her beauty was widely spoke of throughout the kingdom, and her powers were not feared but more respected and admired amongst the commoners. For her power is very unique in that she has the ability to make everyone that looks at her feel empowered within their own unique beauty. All fear of what others think, all past convictions, and all short fallings that one feels about themselves would instantaneously fade away allowing the person that gazes upon the princess to resonate in the profound conclusion that they too, are uniquely beautiful. 

One day a stranger rode into the kingdom and demanded graciously an audience with the princess. The stranger was granted her court. He fell to his knees begging the princes, “My name is Lesson and I am from a far-off land called Earth. My people have lost their way. They have forgotten how to look within themselves and find their own beauty. Instead they have allowed a dark force to lead them into an illusion of happiness. They are trapped and need your help and your extraordinary powers. Please help us… I fear without your help, our world will be destroyed.” 

Present day, planet earth, Charleston, SC USA. The people are almost crawling over each other as population rises to hundreds of thousands of more people inhabiting per month. Waters are rising, and the good fight is being challenged constantly both locally and world-wide. This is a time where only one thing matters to the masses. Only one thing they crave to make themselves whole. Only one thing. “More.” They just feel they need… more. 

A princess sits in a court yard dressed in a beautiful gown with a crown perched gently atop her head. Her eyes are sincere within a gentle gaze and her welcoming smile attracts the curious. From a distance, it may look as if she is wearing a magic cloche of some sort. But as you get closer, you see the birthright from her land. Both of her shoulders are deeply darkened all the way up to her neck. The marks that would weigh so heavy on the people from this planet, proudly decorate her welcoming nature. She jokes with the on-comers about her interesting appearance, allowing them to feel at ease until they themselves, feel beautiful too.

The princess became very celebrated here on earth and the delusion of “more” began to fade into a resounding, collective contentment amongst the people. The people of the town asked the princess to stay and begged her to become an earthling. With a humbling smile she respectfully declined. “My new family, I love you all, but I must go back to my people. Please look with not just your eyes but your heart and see that you are all uniquely beautiful. Be satisfied and never crave to have ‘more’ again.” And with those words, the princess disappeared. 

Giant melanocytic nevi (GCM) is a skin condition characterized by an abnormally dark, noncancerous skin patch (nevus) that is composed of pigment-producing cells called melanocytes. When children come into this world with this condition, something profound happens. The parents become worried for their child’s quality of life, the doctors instantly identify the condition and begin to explain medically what it means, the nurses see how different this baby looks from the others and begin to write the child’s condition onto paper thus permanently identifying the child with GCM. Everyone shifts their bliss from “new life emerging” to “potential heart break.” Everyone except one person, that little baby. She still has hope and eyes wide with new found life and overflowing amounts of unconditional love. 

When Lauren Hagenmeyer was born with this condition, she only felt the connection of love with her mother. It was years into her life before she was taught that she was different. Even through the anxiety of knowing that she was in the spotlight of every room she walked into, she decided to divert the disdain with humor. She would joke with her classmates using her tall statue in conjunction with her large darkened marks from the top of her neck throughout her back, telling them that she was part giraffe. 

Little children can be very impressionable amongst the cruelness of their peers. At times and times again, she was painted with shame by her classmates due to her natural unique look. Yet Lauren fought hard to attain a happy spirit in every way she could create. Even though she painfully absorbed the pointing and snide remarks, she still forced smiles, made jokes, and excelled her positive nature in hopes of making everyone around her feel accepting and at ease. All this made possible with the constant encouragement and unconditional love from her Fairy Godmothers.  Teachers (most commonly, librarians) who reveled in literature, realized her innate ability to write and create. They put books in her hands and fed her knowledge and encouragement. Through their support and her oldest sister’s guidance, Lauren was able to find a path through our predecessors’ writings that wove a tapestry of hope in a world less providing. 

Lauren didn’t grow up with her mother as a child. She reconnected with her mother, Jenny Hagenmeyer, while she was in her teen years. Together they worked on recreating their relationship. While Lauren fought and conquered her battles in everyday life, Jenny was fighting her own battles. She had been diagnosed with Huntington’s Disease and knew that the fatal diagnosis was closing in. Lauren became her caretaker and spent the last years of her mother’s with her. In 2018, Jenny Hagenmeyer succumbed to her fight. Lauren was 24 years old. 

Huntington’s Disease is an inherited condition in which nerve cells in the brain break down over time. The body’s response to this breakdown displays constant trembles and dysphoria escalating progressively until the cells collapse. It is fatal. And yes, it is genetic. 

After her mother’s death in 2018, Lauren was tested for the disease. The test conclusions came back positive. Lauren too has Huntington’s Disease. Her symptoms are said to begin around age 35 to 45 and from there, Huntington’s will take its course. Lauren is now faced with another uphill battle. One that will be the battle of her life. 

With grief in her heart, Lauren looked for an outlet. She searched her creative mind for a way to pull herself up from a seemingly bleak future, while trying to cope with her mother’s passing. She devised a plan to celebrate her identity in this world with vibrant colors and regain her powers. At first her decision to venture into this manifestation was a private one. But then she began to see a new foundation. A way to honor her mother’s memory, and help people see more magic within themselves while celebrating diversity. 

Lauren made a choice that proposes an unconventional change. This change will be way beyond education, but more a change in human perception. Utilizing the concept that has proven to work throughout her youth, Lauren has decided to go on a world-wide crusade accentuating and glorifying the chosen youth of this world that have been affected by GCM. By combining her love for fairytale princesses with her own unique look, she has created The Polkadot Princess Project to honor her mother’s memory and educate the world. 

“At first, sharing my story simply seemed like a desperate plea for attention, or too preposterous,” says Lauren, “After all, if someone has a rare condition [such as GCM] the likelihood of possessing another[Huntington’s Disease] just seems farfetched. But this idea is one of the reasons that Huntington’s Disease and GCM are very rarely understood. It is because of the very low percentages they present in the US population.” 

Lauren wanted 2019 to be the year that initiated action. She pulled together some photographer friends and began to collect outfits that would recreate some of her childhood and present-day favorite princesses. They constructed many impromptu photoshoots utilizing Charleston’s naturally whimsical background with the “Cinderella” theme, and the Polkadot Princess was born. 

Lauren uploaded her “Cinderella” themed shoot to her Facebook and tagged the Nevus Outreach, a non-profit group created to educate and support people affected by GCM. The support and gratitude came pouring out. Parents of children with GCM began dressing their children in whimsical costumes and submitting them in support of the new perspective of celebrating this unique condition and not demeaning it. 

“Children with GCM are seen as different and that’s often anathema for these children to be accepted in the cruel social politics of elementary school, or the even more macabre ones in middle school,” explains Lauren, “it takes a major hit to one’s self-esteem and place in the world. One of the reasons why I balked for so long before attempting to dress up as Cindy was due to the deep-seated sense of shame over my appearance that took a good long while to shake off” Lauren explains. But when the flood of grateful replies to her Cinderellaphotos, often with pictures and stories of their own polka-dot princesses came rolling in, she realized that her vision was shared from coast to coast and around the world. A vision to create a new, more uplifting perspective of this condition. Here are a few of the many people who have shared:

Lauren Isbell- “My polka dot princess is so thankful she can learn the ropes from so many of you who are teaching us all self-love.”

Crystal Near– “Wow so beautiful an inspiration to our beautiful nevus Princesses thank you so much for sharing!”

 Lacey Jackson– “I’m so happy my Natalie has a princess like you to look up to!”

Sarah Aboul Fotouh– “My little princess Dalida she has a very large nevus surrounds her body ❤️❤️ and she is beautiful, just like you!”

In the master plan, Lauren is levying the photoshoots to gain awareness for not just GCM, but also for Huntington’s Disease. “Because HD is not a commonly understood or accepted condition, having this illness can be cause for a substantial amount of isolation and loneliness for youth,” explains Lauren. Much like her youth with GCM, people diagnosed with Huntington’s are sometimes ostracized from society and tainted with fearful stigmas. Lauren sees that combining the conditions in the Polkadot Princess projects may create a powerful force of positive effort in celebrating people that are living with either condition. Or in her case, both conditions. 

The National Youth Association is the youth chapter for Huntington’s Disease Society of America. Their convention or “Ball” as the Polkadot Princess calls it, is in June. This year she will go in full princess gear representing her Polkadot Princess initiative and celebrating diversity princess style. “Getting involved with the National Youth Association (NYA) provided me with a tremendous amount of hope and solace,” says Lauren.“There, we learn to celebrate the lives of those whom have come before us, and grieve, instead of despair.” Each June the NYA holds a national convention. This event has been the backbone in Lauren’s healing process and she appreciates the opportunity to now potentially give back something to the NYA crew. “I’d argue that these experiences [at the NYA convention] are something like Cinderella’s surviving the glass slipper after midnight. Even when the glow of the event and community has faded, if something lovely (even though arguably delicate) remains of those memories at the ultimate stage 5 of the disease (end of life), it can make all the difference in the world.”

Lauren is pledging to help one youth get to “The Ball” by raising funds for transportation and lodging. She feels if she can help at least one person feel the love and exhilarating unity within the powerful support of the NYA, then they too can spread the support to others to help others see their unique beauty. You can help by giving to her GoFundMe drive at https://www.gofundme.com/polkadot-princess-help-huntington039s-disease-youth

BEAU Magazine will feature her princess profiles for each week until right before the convention in June. Please share if you know someone that has been affected by GCM, Huntington’s Disease, or if you feel moved by her story. 

Photography by Ariane Mahaffey

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