Remember the photo of a little girl in her wheelchair outside an Ulta Beauty store staring at an advertisement of a woman also in a wheelchair? Well, it has been a year since she stole our hearts. And guess what…
Ulta Beauty arranged for Maren and the model in the advertisement, Steph Aiello, to meet one special morning, where they raced Through Ulta in their wheelchairs, shopped together and Steph invited Maren to attend the annual Rollettes Experience in Los Angeles. Afterwards, the two hosted an inclusive dance party with children of all abilities in Maren’s community. It was a magical day and started a great friendship.
Since then, Steph and Maren’s family have remained in contact. Steph even sent Maren a Barbie Fashionistas Wheelchair Doll for Christmas, which she absolutely adores. Maren’s photo has since been published around the world and the resounding message of representation and inclusion continues to spread. To say it’s been a good year is an understatement.
However, the best news that Maren’s family has received within the last year was hearing that researchers and scientists believe her rare disease is TREATABLE. The words every family dreams of hearing! It took four long years of searching for an accurate diagnosis, a journey that led Maren’s family to the National Institutes of Health’s Undiagnosed Diseases Network in Bethesda, MD, a competitive research network only for the rare of the rarest cases, which explained Maren’s symptoms she displayed since birth.
However, since Maren’s rare disease is considered degenerative, her family still does not know what her future will look like. So, they have since founded the CACNA1A Foundation; their greatest chance for new life-saving treatment options and one day, a cure!
If you wish to support Maren and all the other patients affected by a CACNA1A gene variant, please visit www.CACNA1A.org. To follow Maren’s progress, you can join her Miles for Maren Facebook page.