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Woman lives with 15 screws in her skull to keep her alive - and no cure

One of the worlds rare female Duchenne muscular dystrophy patients has defied doctors predictions that she wouldnt live past age seven by thriving with a life-saving device

[A woman living with 15 screws embedded in her skull ]

A woman living with 15 screws embedded in her skull (Image: steffninicole_hollowtips/Cover Images)

A woman living with 15 screws embedded in her skull has defied doctors who once warned she would not live past the age of seven. Steffni Randle, 27, from Texas, was diagnosed as a toddler with Duchenne muscular dystrophy (DMD), a progressive muscle-wasting disease that almost always affects boys.

Steffni is believed to be one in 50 million females with the condition. Today, the content creator, has amassed 7.1 million likes on TikTok and has an army of nearly 90,000 Instagram followers, where she shares candid glimpses into life with her life-saving Halo device.

I live my life with 15 screws in my head, Steffni said.

[She was diagnosed as a toddler ]

She was diagnosed as a toddler (Image: steffninicole_hollowtips/Cover Images)

My spine is curved into an S and compressing my right lung, so the Halo is stretching it out and keeping me stable. The metal Halo frame, which was surgically attached to her skull at age 11, connects to traction that helps support and straighten her severely curved spine after scoliosis developed as her muscles weakened.

This is where the 15 screws come in. They are anchored into the outer layer of her skull to hold the frame firmly in place.

Doctors had originally hoped the device would be temporary ahead of major spinal surgery. But because Duchenne muscular dystrophy had already weakened her muscles and lungs, specialists feared the gruelling 15 to 18-hour operation could be life-threatening.

[Steffni Randle, 27]

Steffni Randle, 27(Image: steffninicole_hollowtips/Cover Images)

Instead, the Halo became permanent, and Steffni will wear it for the rest of her life. Despite the daunting reality, she insists the device has given her freedoms she once feared she would lose.

It has completely changed my life in positive ways, she said. Its allowed me to be more independent and do things I thought I would never be able to do.

There were no warning signs when Steffni was born in May 1998, but by the age of two her mum, Sally, noticed something wasnt right. I was constantly falling and couldnt catch myself, Steffni explained.

[She has Duchenne muscular dystrophy (DMD)]

She has Duchenne muscular dystrophy (DMD)(Image: steffninicole_hollowtips/Cover Images)

After an initial dismissal from one doctor, her parents pushed for further testing at Scottish Rite for Children in Dallas, where the devastating diagnosis was confirmed. The doctors told my parents I probably wouldnt make it past seven years old, she said.

By age seven, her muscles were no longer strong enough to support walking and she began using a power wheelchair full-time. As the disease progressed, Steffni developed severe scoliosis, with her spine curving into an S-shape that began pressing dangerously against her right lung.

At 11, she underwent surgery to have the Halo fitted, beginning what was meant to be a three-month hospital stay. My mum had to make a huge decision, Steffni said.

[The content creator, has amassed 7.1 million likes on TikTok]

The content creator, has amassed 7.1 million likes on TikTok(Image: steffninicole_hollowtips/Cover Images)

But two months into treatment, tests revealed spinal fusion surgery would be too dangerous due to her weakened breathing muscles.

The safest route was to keep the Halo, she said. 16 years later, the device remains part of her daily life, and part of her identity.

Because Duchenne also affects her respiratory muscles, Steffni uses a breathing machine at night to prevent dangerous pauses in breathing while she sleeps. There is no cure for my condition, and it is slowly progressive, she said.

[I live my life with 15 screws in my head, Steffni said]

I live my life with 15 screws in my head, Steffni said(Image: steffninicole_hollowtips/Cover Images)

But I promised myself Im going to live life to the fullest for as long as I can. Growing up, the visible Halo often drew stares.

I was very self-conscious when I was younger, she admitted. You definitely feel different when people are always looking.

But with the support of her mum and brothers, Trey and Tyrone, her confidence steadily grew. Today, Steffni can even take assisted steps using a specialist walker, something she once believed would never be possible.

[Doctors had originally hoped the device would be temporary ahead of major spinal surgery]

Doctors had originally hoped the device would be temporary ahead of major spinal surgery(Image: steffninicole_hollowtips/Cover Images)

Her brother Tyrone said: Shes living life to her best and doing what she likes to do. Trey added: Shes the strongest person I know.

Now Steffni is using her rapidly growing social media platform to encourage others facing disability, illness or mental health struggles. Ive always said if I can inspire just one person, my life is complete, she said.

Like many online creators, she has faced cruel comments, but refuses to let them shake her. You could never make me hate my life, she said.

If people cant accept me with my Halo and my wheelchair, then they were never meant to be in my life. She also speaks openly about her battles with anxiety and depression, urging others to seek support.

Some days are easier than others, she said.

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