A mother who has a child with rare genetic diseases helped her daughter feel less alone by giving her Elf the Shelf the same disability. It includes a wheelchair, a feeding tube and a wheelchair. 

Samantha Lackey, from Phoenix, Arizona, wanted her two-year-old daughter, Stella – who has been in a wheelchair since she was nine months old – to see that there are others out there like her, so she made her Elf of the Shelf, who is named Bean, use a wheelchair too.

Samantha will move the elf every night to another room in the house after the baby goes to bed. It is an annual tradition many families practice in advance of Christmas, to help their children get excited for Santa’s arrival. 

Stella isn’t the same as other elves. Stella’s elf uses a wheelchair, a medical feed tube and the same as her.

Stella was diagnosed just one month after she was born with spinal muscular Atrophy (SMA), which affects her ability to walk.  

A mom made her Elf on the Shelf handicapped so that her daughter - who suffers from a rare genetic disease - could feel recognized

One mom disabled her Elf-on-the-Stair handicapped to make her daughter feel more recognized.

Samantha Lackey, from Phoenix, Arizona, wanted her two-year-old daughter, Stella, to see that there are others out there like her, so she made her Elf of the Shelf, Bean, use a wheelchair too

Samantha Lackey of Phoenix, Arizona wants her daughter Stella to be able to recognize that other children are just like her. Bean, Elf from the Shelf was also made use of a wheelchair by Bean.

Stella was diagnosed with spinal muscular atrophy just one month after she was born, and has been in a wheelchair since she was nine months old

Stella was only nine months old when she was diagnosed with spinal muscular Atrophy. Since then, she has had to use a wheelchair.

Her mom decided to make the holiday tradition more inclusive, and she even spray painted the wheelchair purple so that it looked just like Stella's

It was her mom’s idea to make holiday traditions more inclusive. She spray painted the wheelchair purple for Stella so it looked like Stella.

Every night, Samantha positions the elf so that it appears like he's participating various activities - including things that little Stella has to do as part of her treatments

Samantha places the Elf every night so it looks like he is participating in various activities, including those that Stella must do for her treatment.

What is spinal muscular atrophy (SMA)? 

  • SMA is a degeneration of neurons in the spinal cord and brain, making it more difficult for the body to function. 
  • This can lead to weakening and shrinking of the muscles, which could cause issues with head control, sitting unaided, or even walking. 
  • SMA patients may also experience difficulty swallowing or breathing in some instances.
  • This disease can often affect babies and young children.
  • There is no complete cure for SMA, but you can improve the condition through the use of a gene replacement therapy called Zolgensma, and two drugs, called nusinersen (Spinraza) and risdiplam (Evyrsdi)
  • SMA is a gene that affects approximately 6 million Americans, with one out of 40 being carriers and one in fifty people being carriers. 
  • SMA can affect anywhere from 10,000 to 25,000 adults and children in the United States. The disease affects one out of 6,000-one in 10,000 children.
  • Source: WebMD and SMA Foundation

Her mom was concerned that her son would not have anyone to talk to so she decided to include them in the holiday celebration.

Samantha designed the Elf so that it looked exactly like her young daughter. She also positions him often. Bean so that it appears like he’s participating in various activities that little Stella has to do as part of her treatments.

Bean made Bean climb up her bedroom wall. Stella also does it often in occupational therapy. 

Another night she connected a nasogastric tub to Bean. Stella then uses it to feed her. Bean had hot cocoa in her tube. 

Sometimes he would be seen in the bath, playing doctor and pretending to eat breakfast. 

This mom-of-1 even painted her wheelchair purple to match Stella’s.  

According to WebMD, SMA causes a breakdown of the nerve cells in the brain and spinal cord, which makes it hard to use muscles. 

This can lead to weakening and shrinking of the muscles, which could cause issues with head control, sitting unassisted, or even walking.

SMA may cause patients to have difficulty breathing and swallowing in certain cases. SMA can affect children and infants. 

Samantha said that she didn’t second guess that the elf was in a wheelchair. This is because she is so familiar with it.  

“I think it is important for her to see me as a mirror of this little elf.

One night, she attached a nasogastric tube to Bean - which Stella uses to get food and medicine into her stomach. However, Bean's was filled with hot cocoa

One night, she attached a nasogastric tube to Bean – which Stella uses to get food and medicine into her stomach. Bean found hot cocoa in her tube.

Other times he was seen swimming in the bathtub (pictured), playing doctor with her other toys, and eating breakfast using pretend food

Other times he was seen swimming in the bathtub, playing doctor with her other toys, and eating breakfast using pretend food (pictured)

Sometimes he could be seen playing in the bath (left), pretending to eat breakfast (right), or even swimming in it (left).

During a recent interview with Good Morning America, Samantha explained that because she has never had a disability, she worried that her little girl wouldn't have any one to relate to

Samantha shared her concerns with Good Morning America during a recent interview. She explained how she was worried about the possibility of her baby girl not being able to relate because she had never experienced a disability.

Samantha stated that her idea was born after Stella got Stella a Barbie doll who also had a handicap and that Samantha immediately saw Stella grow in confidence.

She was afraid her baby would not be able to relate because she hasn’t had to deal with a disability in her life. 

‘As a mom I was concerned about how I was going to relate with my child. Although I do not have a disability I was unable to relate with people who were disabled as a child.

“So she can truly see what representation can mean to her, it was no brainer.” 

The Elf on the Shelf tradition was started in 2005 after author Carol Aebersold released a children’s book about it – and it has since become widely popular.

The elf is believed to visit children prior to Christmas, to make sure they’re being good and naughty. After checking on their behavior, he returns home every night to Santa to bring back his report.

Samantha shares photos of the elf often to Instagram in hopes it sparks conversation between her and her kids.

She said, “Yes it is a silly little thing that I am doing to my daughter this year. However, I hope that it opens up a dialogue that our children find hard to have.”

“Having conversations about someone using a wheelchair, or someone with a mobility device is difficult for parents. If you have never done this before, then why not start the conversation with Elf on The Shelf?

She said that she came up with the idea after she got Stella a Barbie doll that was also in a wheelchair, and she instantly saw her confidence grow

After Stella, a Barbie doll with a disability, gave her the idea to create it. Her confidence grew immediately.

Samantha often shares pictures of the elf to her Instagram account, in the hopes that it'll spark conversation between parents and their kids

Samantha frequently posts photos of the elf on her Instagram, hoping it sparks conversation between the parents and the kids. 

She added: 'If we start with small conversations, whether it be Elf on the Shelf or inclusive toys or a character in a book that they see, that's just going to help a future generation be inclusive'

She stated that if we started with small talks, regardless of whether Elf on a Shelf is inclusive toys or inclusive books, then that will help future generations be more inclusive.

“I think that inclusion and normalizing the disability will only make our children more accepting of people with disabilities.

Samantha stated that Stella is frequently questioned by curious children. However, she recalled a moment when Stella was with a child years ago at a doctor’s office.

Samantha heard Stella’s mom asking why Stella was disabled and the young girl noticed. Stella was in a wheelchair and Samantha asked her mother why.

She recalled, “I really appreciated it because that gave me the chance to have a discussion with Stella about why she was in a chair.”

“And she didn’t care why Stella was in the wheelchair. “She just loved purple wheels.

Samantha said, “We are a lot more difficult on ourselves.” Start with small conversations. It doesn’t matter if it’s Elf at the Shelf, inclusive toys, or their favourite TV character. That’s going to make it easier for future generations to be inclusive, be kind, and be good people.