Mom Creates ‘Elf on the Shelf’ in Wheelchair for Daughter with Rare Genetic Disease
Two-year-old Stella Lackey has spinal muscular atrophy (SMA), a genetic disease that affects her motor function, and she uses a purple wheelchair and pink ankle-foot orthoses.
Stella’s mother, Samantha Lackey, wanted to make sure that her daughter saw herself represented in her Elf on the Shelf doll, so she created Bean on the Elf, who also uses a purple wheelchair and pink ankle-foot orthoses.
When Bean the Elf does various activities through the month of December, he does things that Stella does, like going rock climbing at occupational therapy and using a nasogastric tube, which carries food and medicine to the stomach through the nose. However, Bean the Elf’s tube is filled with hot chocolate.
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“I don’t think she even second guesses that the elf is in a wheelchair because that’s just what she’s so used to,” Lackey, of Phoenix, Arizona, told “Good Morning America.” “For me to be able to mirror this little elf with her personality, I think she truly appreciates it.”
Stella was diagnosed with SMA at just one month old, and received her first wheelchair, which she refers to as “wheels wheels,” at nine months old.
Lackey said that when she and her husband gave Stella her first Barbie doll, who uses a wheelchair, they saw her confidence grow. They have since made even more efforts to ensure Stella sees herself represented in toys she plays with, books she reads and shows she sees.
“As a mom, I was worried about how am I going to relate to my child. I don’t have a disability, I unfortunately never had relationships with disabled people growing up,” Lackey said. “So to see her truly appreciate how much representation can mean, it was a no-brainer.”
Image source: Good Morning America
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