Incredible bravery of girl, 6, born without bones who has overcome illness to learn how to dance
This is one of the few occasions that I’m ok with a bouncer or walker 🙂
From the article:
Janelly, from Antioch, Tennessee, was born with the most severe form of hypophosphatasia, an extremely rare bone disorder which leads to loss of all bone mineralization during childhood.
She was unable to move any of her body, and her bones didn’t even show up on X-rays.
By the time she turned two, she was still relying on ventilators and tracheotomies as she did not have ribs to support her breathing – and her parents were uncertain how much longer she would survive.
But when she turned two years and eight months old, her parents put her forward for a clinical trial involving an experimental medicine at Monroe Carell Jr. Children’s Hospital at Vanderbilt.
The clinical study treated nine toddlers from across the world with a biologic enzyme called asfotase alfa, which encouraged bones to grow.
But her parents started noticing she was gaining muscle control and, after a year of treatment, she was finally able to move all of her limbs. After 18 months, her ribs started to form.
Now, four years since the start of her treatment, she no longer uses a ventilator and loves dancing and bops along to music in her stroller.
Enjoy the video!
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