Remember the viral photo of a little girl in her wheelchair outside of the Leesburg 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 five-year-old Maren and the model in the
advertisement, Steph Aiello, to meet one special morning, where they raced through Ulta in their wheelchairs and shopped together. Steph also 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 Loudoun County. It was a magical day and started a great friendship.
Although Maren’s expressive language skills are limited, her facial expression did say it all, according to her mother, Carolyn Anderson. “She was smiling and dancing the whole time and she did say “best day ever” before bedtime that night,” she recalls.
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 has 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. They, along with two other families, have since founded the CACNA1A Foundation, which will support research that they hope will one day lead to a cure.
Since Maren’s rare disease is degenerative, her family does not know what her future will look like. It is their greatest hope that the CACNA1A Foundation will lead to a life-saving treatment for Maren and other patients.
The family hopes to raise awareness for Maren and all the other children with these conditions, as well as those with rare diseases. You can help cheer her along by joining the Facebook group Miles for Maren.
If you wish to support Maren and all the other patients affected by a CACNA1A gene variant, please visit www.CACNA1A.org.
