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Saturday, January 28, 2023

A girl as fragile as glass – she can break a rib if she sneezes

Zoe Lush from California may be one of the world’s most fragile people, but the now 12-year-old girl refuses to let frequent broken bones and painful surgeries take her will to live.

Zoe was born with a rare disease called osteogenesis imperfecta, which causes a dysfunction of the skeletal system. Hence the name of the disease, which stands for imperfect bone formation – but it is also known as vitreous bone disease. Her parents, Curtis and Chelsea Lush, were initially advised by doctors to terminate the pregnancy as they thought it was the best thing to do.

“They did a 3D ultrasound and saw several fresh or healing fractures. She had broken ribs, her arms and legs were about 6 weeks behind in development. They said her condition was very serious and she would probably not survive until she was born,” Chelsea recalled. But the parents have not given up on their daughter.

Photo: Our Life/YouTube

Doctors had initially expected a more severe version of the disease, but after Zoe was born in October 2010, her condition turned out to be slightly better than expected. When she was born, she had several broken bones and had to stay in hospital for a week before being discharged.

The hardest part was probably the first period, as the family had to watch her every movement and even then they couldn’t avoid minor accidents. In the beginning, changing the baby’s diapers was a three-person job: someone had to lift the little girl’s pelvis while someone else changed her diaper, and a third person had to hold Zoe’s arms to prevent her from making sudden movements.

On one occasion, Curtis was holding the little girl’s arms, and although he only gave her a very small amount of room to move, Zoe made a sudden movement and broke a bone. The father then felt a deep sense of guilt.

Photo: Our Life/YouTube

“When it happened, I felt terrible. I felt like I couldn’t do anything good, that I was just hurting her,” said Curtis.

Zoe has undergone several surgeries since birth, one of which was to straighten the bones in her legs and another to prevent her spine from collapsing. This was due to a condition called cervical kyphosis, which is an abnormal curvature of the spine, which made necessary for Zoe to wear a neck brace for years afterwards.

But as time went on, she became stronger and although she is still very fragile and has to be careful, she is now a little easier to manage. Her bones don’t break as easily now as they did when she was a baby, and the fractures she has now are mostly the result of minor accidents that could happen to other children.

Photo: Our Life/YouTube

In any case, Zoe is enjoying having a bit more mobility, although she still needs a wheelchair and has to be very careful because the slightest wrong move can cause an accident. In addition to all the other treatments and physical strengthening exercises, she is also undergoing speech therapy because of structural problems with her mouth and consequently her voice production.

The little girl is now making such great progress that her parents are optimistic about the future and hope that their daughter will have the same opportunities in life as anyone else.

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