Due To A Rare Condition, This Three-Year-Old Is At Risk Of Dying Every Time She Goes To Sleep

#1

Roberto and Silvana Teixeira from Zamora, Spain spent years trying to start a family. Four years after their first attempt at getting pregnant, they finally conceived via IVF. They were so excited to finally have their first child, but they had no idea what struggles they were in for once their baby girl was to be born.

#2

“I think that for every father this is the biggest thing that ever existed,” Roberto said. “To have a child is the most beautiful and most important thing in his life.”

#3

Baby Paula was born via c-section at 41 weeks. The couple was overjoyed to hold their baby after she was born. Sadly, a few hours later, Paula had stopped breathing. Her situation was so bad that she was rushed to an emergency hospital 40 minutes away from where she was born.

#4

Once at the emergency hospital, the baby was put on life support. After two long months of rigorous testing, Baby Paula was finally diagnosed with Ondine Syndrome.

#5

Ondine Syndrome has no cure. It is a respiratory disorder that affects the nervous system that controls the body's blood pressure and heart rate.

“Since Paula came home, we can’t sleep as we used to before,” Silvana revealed. “One of your eyes is closed and the other is wide open thinking is everything okay.”

#6

This condition is extremely rare and only affects 1,000 people in the whole world. According to her pediatrician, the number of cases is so incredibly low that the diagnosis often takes a long time to figure out.

#7

People with this condition have difficulty breathing especially when they sleep. They need to be hooked up to a ventilator in order to receive a steady supply of oxygen. Paula's condition is so severe that she could die every time that she falls asleep.

#8

She will always have to have someone watch her while she sleeps...her whole life. Every night, now three-years-old, Paula sleeps her mother anxiously sits by her bedside to keep her from dying in her sleep.

“If everything is silent, I still come to see her, because there’s that fear. What if the machine fails?” Silvana added.

#9

During the day, things with Paula are as any other normal child's life would be. She even goes to school. But, her condition means that her life will forever be anything but ordinary.

#10

Since this condition often goes undiagnosed due to its rarity, many sudden and unexplained deaths could have been a result of this syndrome.