NOTTINGHAM, NETRALNEWS.COM – A young girl needs to spend most of her time at home because she suffers from a health disorder that causes allergic reaction when exposed to hot and cold weather. The young girl’s name is Bethany Bell, and she was born with a chromosomal disorder known as a 1q4 delesi which means she becomes ill if her body temperature fluctuates.
This means the family of nine-year-old from Bestwood Park, Nottingham, should avoid taking their child out on a sunny or cold day.
At birth, Bethany’s head grew rapidly. She underwent two operations on her brain at the age of four weeks, and her head has not grown well since she was three months old.
"It's destroying my feelings.You never know what's going to happen next," said her mother, Charlotte (35), as quoted by Daily Mail.
It is known that there are only 50 cases reported worldwide from the 1q4 case. The condition has made Bethany not be able to crawl or speak. On the scan of Mrs. Bell's pregnancy during 20 weeks, it was found that she had hydrocephalus, a buildup of fluids in the brain.
Her parents were warned that she needed surgery immediately after birth because excess fluid put pressure on the brain, which could damage their child. During the first three months of her life, Bethany was always in and out of the hospital.
By the time she was six months old, Bethany had stopped eating by mouth and had to be fed through a nasal tube.
"It's a relief to get a diagnosis so we know what's wrong with our baby," her mother said.
Now Bethany needs care all the time and depends on the parents for everything. When she was one year old, she had gastrostomy, in which a food tube was inserted directly into the stomach. Bethany also had Nissen fundoplication, an operating procedure to treat gastroesophageal reflux disease.
Bethany now lives with a tube connected to her head that brings fluid to her stomach.