13 Year Old Girl ‘Locked’ in Her Own Body After One Simple Childhood Action, What Happened?

A mother has bravely shared the heartbreaking journey of her body daughter’s battle with Rett syndrome, a rare condition that has left her “locked” inside her own body. Lucy Glenn, who is now 13 years old, was diagnosed with the condition after her development took an unexpected and drastic turn when she was just 18 months old.

A Sudden Change

Until she turned 18 months, Lucy was developing just like any other child. She was learning to walk and talk and was a completely healthy toddler. However, one day, something changed. Katherine McCready, Lucy’s mom, remembers that one morning, Lucy woke up and began acting completely different. The playful and curious toddler stopped playing with her toys, and Katherine noticed that she started pulling her own hair out of stress.

Lucy’s behavior became more concerning as she managed to pull out all her hair, prompting Katherine to rush her to the doctor. After months of visits and tests, they received the devastating diagnosis: Lucy had Rett syndrome.

What is Rett Syndrome?

Rett syndrome is a rare neurological and developmental disorder that body primarily affects girls. According to the Mayo Clinic, it results in the progressive loss of motor skills and language. The disorder causes issues with coordination, communication, and movement, often accompanied by seizures and intellectual disabilities.

For Katherine, hearing that her daughter would never walk, never talk, and would likely not live beyond the age of 19 was a crushing blow. “Those words will always stay in my head,” she shared. “It felt like my world just fell apart.”

Life with Rett Syndrome

Now 13, Lucy’s condition has progressed significantly. She lives on a body strict diet of blended food due to severe food intolerances and relies on a wheelchair and standing frames to move. Her ability to speak has been lost, and Katherine describes her as “locked in there,” meaning Lucy’s mind remains active, but she can no longer communicate her thoughts or desires verbally.

Despite the challenges, Katherine and her partner are determined to give Lucy a fulfilling life. They take her on family vacations, to concerts, and even on camping trips. They’re doing everything they can to ensure that Lucy continues to experience the world to its fullest, despite her limitations.

A Life-Changing Device

In an effort to help Lucy communicate, Katherine and her family body have started a GoFundMe campaign to raise money for an Eye Gaze device. This innovative tool is similar to a tablet, but instead of using hands, Lucy can control the device with her eye movements.

Katherine explained, “Lucy is a person who is locked in there. At the body moment, she gets frustrated when a song comes on she doesn’t like, so we’re always ready with the remote.” She added that when Lucy wants to take a shower, she will look toward the stair lift, signaling her desire.

Once Lucy is trained to use the Eye Gaze device, Katherine hopes it will give Lucy the ability to form sentences with her eyes. “This will give her so much independence, a voice, and an opinion,” Katherine said. “I think it’s going to help her massively.”

The Road Ahead

Although Rett syndrome has body stolen much of Lucy’s independence, her family remains committed to ensuring that she leads a life filled with joy, adventure, and meaningful connections. The Eye Gaze device represents a step forward in helping Lucy regain some level of independence and find new ways to express herself.

As the family continues their journey, they are hopeful that advancements in technology, along with their love and determination, will help Lucy break free from the physical limitations of her condition and communicate with the world once again.

You can support Lucy’s journey by donating to her GoFundMe campaign.