Just imagine living in fear that your child’s bones will shatter with a simple fall. This is reality for four-year-old Evelyn Chuah’s mom Cheok Li Ting.
Evelyn reportedly has a condition called osteogenesis imperfecta (OI), also known as brittle bone disease. This is a congenital condition that results in very weak bones, causing them to break easily.
What this means is that little Evelyn can’t run, skip, and jump like other children her age.
Instead, when in a playground, she has to hold on to her mother’s hands at all times.
A simple fall can result in many fractures, landing her in the hospital for months.
A shocking diagnosis
According to reports, when Evelyn was born, local doctors were confused by several symptoms she exhibited.
She had a dislocated hip and her right foot was deformed. She could only turn her little head to the left.
When doctors investigated more, they found a healed fracture on her right rib cage — an indication that this bone damage could have only occurred in-utero.
Evelyn was diagnosed with OI type III when she was just nine months old.
Cheok was was shocked about her daughter’s diagnosis. “My first thought when I found out about Evelyn’s condition was that our child was going to be wheelchair-bound for life and that I would have to take care of her 24/7. I was very depressed,” Cheok told star2.com.
However, the little girl, exceeding all expectations, took her first step at the age of two-and-a-half after a year of physical therapy, and now has a body and leg brace fitted into special shoes that helps her walk.
Still, her mobility is restricted by her condition. She can’t go to the bathroom on her own and has to have someone with her at all times while at kindergarten.
Keep reading about this brave little girl on the next page.
Fragile, yet strong
Over her four short years of life, this little girl has had a cracked elbow, several broken teeth and 11 fractures from a broken hip.
When she was just one-and-a-half, Evelyn had already suffered a spinal compression fracture after falling on her back. She also has developed scoliosis, which needs surgery.
Evelyn also has to get monthly doses of intravenous pamidronate in order to increase her bone density.
There is always hope
An expert on the condition, Professor Dr Thong Meow Keong explains that while the future may seem bleak for those with OI, “the outcome for the disease is ‘much, much brighter’ nowadays.” What can make a difference is how the condition is managed early on.
“That simply means going for early treatment to strengthen the bones, prevent deformities, and maximize mobility. Once they pass the first few years of life, we will be able to see very clearly if they are able to achieve independent function. So, there’s no reason whatsoever why a patient with OI should not be able to go to school or to university, get a job, and even start a family,” explains Prof Thong.
READ: Boy with brittle bone disease shows off great drawing skills
If you have any insights, questions or comments regarding the topic, please share them in our Comment box below. Like us on Facebook and follow us on Google+ to stay up-to-date on the latest from theAsianparent.com Philippines!
