Suffering from rare bone disorder, 13-year-old Iraqi girl finally walks

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Thani had her first fracture at the age of two. She fractured her leg as she attempted to walk. The same year, she had three fractures. By the time she was five, she had had so many fractures in her legs that all attempts to walk had to be abandoned.

“Her limbs starting deforming and she had to crawl. We carried out two surgeries in Iraq to correct the deformity but it led to more problems. The growth of her right leg was hampered and it is shorter than the left leg now,” said her father Khudur Mohammad, a farmer in Baghdad.

According to Thani’s translator (the family can speak only Arabic), Thani crawls in her house and could never join school with the increasing deformity.
According to orthopaedic experts, there are 14 types of OI, which may range from mild to severe form of deformity and may even go undiagnosed if the collagen production is high enough. In Thani’s case, her hands and legs had become brittle and her parents eventually lost count of her fractures.

This year, she was referred to India for surgery. In the last three months, she was administered Zoletronic acid injection and underwent several surgeries. According to Dr Alaric Aroojis, orthopaedic surgeon at Kokilaben Dhirubhai Ambani hospital, six metal rods were inserted in both her thighs, forearms and legs to support the weak bones.

“There is no drug or treatment known yet that can produce collagen or cure the disorder. So other drugs are used to provide calcium to the bones,” he said, adding, “since she is a growing child, a telescopic surgical rod had to be inserted in her bones that would elongate as her bone grows longer with her height”.
A telescopic metal rod costs $10,000 in the US. In her case, a sample rod was given to local suppliers and replicated for Rs 6,000 each. In a four-hour surgery, rods were first placed in her legs followed by two weeks’ rest. Then, she underwent surgery on her thigh bone. Over two weeks ago, rods were put in her forearm to support the bone around it.

About 15 days ago, Thani took her first steps, wearing supporters, after eights years. She is excited now to watch a Shah Rukh Khan or Amitabh Bachchan movie and go shopping in Mumbai. According to doctors treating her, she will have to undergo another Zoletronic acid injection after six months and a second surgery to increase the length of her right leg.