Mom makes Elf on Shelf HANDICAPPED so sick daughter feels recognized
Mother of two-year-old girl with spinal muscular atrophy makes her an Elf on the Shelf with the same disability – complete with wheelchair and feeding tube – to help her feel more accepted
- Samantha Lackey 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 use a wheelchair
- 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
- Her mom, from Phoenix, Arizona, decided to make the holiday tradition more inclusive after she began to worry that the tot had no one to relate to
- Not only did Samantha design the elf to look like Stella, but she also positions it so that it appears like he’s doing activities that she often does for her treatments
- Samantha shares pictures of the elf to her Instagram account, in the hopes that it’ll spark conversation between parents and their kids
The mother of a little girl who suffers from a rare genetic disease has helped her child to feel more accepted in the world by giving her Elf on the Shelf the same disability as her – complete with a wheelchair and a feeding tube.
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.
Every night after the tot goes to bed, Samantha moves the elf to a new location in the house – a tradition that many families do in the weeks before Christmas to get their kids excited for Santa’s upcoming visit.
But Stella’s elf isn’t like the other elves. He uses a wheelchair and a medical feeding tube – just like she does.
Stella was diagnosed with spinal muscular atrophy (SMA) just one month after she was born, which makes it difficult for her 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
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
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
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
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
What is spinal muscular atrophy (SMA)?
- SMA causes a breakdown of the nerve cells in the brain and spinal cord, which makes it hard to use muscles
- When that happens, the muscles get weak and shrink, which can cause problems with controlling head movement, sitting without help, and even walking
- In some cases, patients diagnosed with SMA can also have trouble swallowing and breathing
- The disease often effects babies and 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)
- One in 40 to one in 50 people (approximately 6 million Americans) are carriers of the SMA gene
- SMA has generally been believed to affect as many as 10,000 to 25,000 children and adults in the United States. One in 6,000 to one in 10,000 children are born with the disease
- Source: WebMD and SMA Foundation
And her mom, who worried that the youngster would have no one to relate to, decided to make the holiday tradition more inclusive.
Not only did Samantha design the elf so that he looked just like the young girl, but she also often positions Bean so that it appears like he’s participating in various activities that little Stella has to do as part of her treatments.
One night, she made Bean go rock climbing on her bedroom wall, which Stella often does at her occupational therapy.
And another 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.
Other times he was seen swimming in the bathtub, playing doctor with her other toys, and eating breakfast using pretend food.
The mom-of-one even spray painted the wheelchair purple so that it looked just like 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.
When that happens, the muscles get weak and shrink, which can cause problems with controlling head movement, sitting without help, and even walking.
In some cases, patients diagnosed with SMA can also have trouble swallowing and breathing. It often affects babies and children.
‘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,’ Samantha explained during a recent interview with Good Morning America.
‘For me to be able to mirror this little elf with her personality, I think she truly appreciates it.’
Samantha 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.
She has never had a disability, and worried that her little girl wouldn’t have any one to relate to.
‘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,’ she told the outlet.
‘So to see her truly appreciate how much representation can mean, it was a 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.
It is said that the elf visits kids before Christmas to check on who is being naughty and who is being nice – and that he heads home to the North Pole every night while they’re asleep to report back to Santa.
Samantha often shares pictures of the elf to her Instagram account, in the hopes that it’ll spark conversation between parents and their kids.
She added: ‘Yes this is a silly little tradition that I am doing for my daughter for the first time this year, but I truly hope that it starts a conversation that we find really hard to have with our kids.
‘Having a conversation about seeing someone in a wheelchair or seeing someone use a mobility device, it’s hard for us as parents when we’ve never had to have these conversations before, so if you can start it with Elf on the Shelf, why not?
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
Samantha often shares pictures of the elf to her Instagram account, in the hopes that it’ll spark conversation between parents and their 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’
‘I think bringing inclusion and normalizing disability is going to only make our kids a little kinder when they see someone with a disability.’
Samantha, who said she is often faced with curious children asking about Stella’s condition, recalled an extra special moment between her and a child that took place at a doctor’s office years ago.
The young girl noticed that Stella was in a wheelchair and Samantha overheard her asking her mom why. The mom then told her to go talk to Stella and her mom about it.
‘I really appreciated that because it gave me the opportunity to just have a conversation with this 6-year-old about why Stella was in a wheelchair,’ she recalled.
‘And she didn’t really care about why Stella was in a wheelchair. She just loved purple wheels.’
Samantha concluded: ‘We make it a lot harder on ourselves. 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, or on their favorite TV show, that’s just going to help a future generation be inclusive and be kind and be good humans.’
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