Osteogenesis Imperfecta Girl - Tian Tian

This is a story of confession from a 12-year-old girl, an Osteogenesis Imperfecta patient.

"The bones on my spine grow outward, even a short while of sitting hurts. I need assistance for even getting dressed," said the delicate Sweetie. Physically vulnerable like a grade 3 student, Sweetie revealed to us the enormous pain she had been through with the torture of the disease. Teenage is the most exciting period where young girls head out for adventures. However, for Sweetie, a one-minute run is exhausting enough to choke her breathe.

It is not a suffering anyone can imagine

Not only did she lost the ability to exercise normally, she had to undergo pains that normal people do not experience throughout their lives. She was a patient for Osteogenesis Imperfecta type V. (a.k.a brittle bone disease or scoliosis). Similar to many other patients suffering from the disease, Sweetie was found having symptoms of OI when she was only 2 to 3 years old, the time when she just learned to crawl and walk around.

Sweetie has been suffering from the physical pain and limitations brought about by OI throughout the years. "My bones do not grow in the right position, that's why my arm does not bend much, and it is a bit distorted too. My left arm as well. I did had surgery when I was small but it did not help," said Sweetie as she rolled up her sleeves showing us her unbelievably bony and disproportionately small arms.

Keep smiling in times of suffering

Her story might sound like a complete tragedy, Sweetie, however, has never put away the smile on her face. "You know what? The bone on my back is back to its right position!" Sweetie, in her wheelchair, exclaimed excitedly. Next to Sweetie was her mom, feeling complex like the writer did in face of Sweetie 's optimism.

A few months ago, Sweetie received a medical donation of over $300,000 from the Society for the Relief of Disabled Children for an instrumental posterior spinal fusion surgery performed at the Duchess of Kent Children Hospital at Sanday Bay in Hong Kong. The three-week long halo cranial tractor pre-surgical treatment was a total nightmare. Sweetie 's head was tied tightly to the metallic hair-band like machine, with her body affixed to the supporting frame, stretching her body continuously. Nonetheless, such pain was incomparable to the sufferings she had been through all the years.

"I can now look at my mom without raising my head!"

"I am 6.5cm taller than before!", Sweetie told us her good news with a big smile, showing a sign of relief. Sweetie had been suffering from abnormal bone growth, resulting in a tiny body. However, after the surgery, Sweetie 's back no longer bends, but stretching longer instead. "The best thing is that, I can now look at my mom without raising my head!", exclaimed Sweetie.

Sweetie never forgets to be thankful and optimistic even at times of all these sufferings. "I am grateful to the Society for the Relief of Disabled Children for helping me all along. Staffs at the hospital have been giving me encouragements", Sweetie understood that there are many other unfortunate children suffering from the pain of the disease, yet waiting for a chance to receive surgery like she did. Now She has only one humble wish, that is to have more people helping the other patients.

Give a hand, make a difference

Want to make Sweetie's wish come true by supporting other children suffering from the disease? Click "donate" on Lifewire.hk, leave a message of encouragement, share on social media platforms such as Facebook, Instagram etc., and ask your friends to like, share and donate together. Or you can initiate charity events like ice bucket challenge, charity marathon, fundraising cycling or other innovative charity activities to help sick children get their treatment as soon as possible.

The Society for the Relief of Disabled Children (SRDC)
Phone: (852) 2819 3050
Fax: (852) 2817 0322
Email: info@srdc.org.hk