BHUBANESWAR: While girls of her age dream of endless possibilities that life has to offer, 13-year-old Bibhabari Samal is battling with a rare disease forcing her eyes to remain shut.
A native of Padmapur in Keonjhar district, Bibhabari has been suffering from the condition called Cherubism, an auto-inflammatory bone disease, for over five years.
Initially, her parents thought the condition to be swollen eyes, but their world came crashing down when they came to know how complex the disorder is.
Such is the girl’s condition that the bone of her upper jaw has entered into the optics making her unable to open her eyes. On one occasion, when she was cleaning face, one of her eyes had popped out.
With the disease having no definite treatment, the teenager and her poor parents are staring at an uncertain future. Now experts at AIIMS, Bhubaneswar are giving her a chance by planning a complex surgery. For that, AIIMS had to get a 3D structure of Bibhabari’s face specially designed at Bangalore.
Symptoms of the disease developed when the girl was only seven. “We witnessed unusual growth of her face. Her eyes appeared big and swollen. As per advice of a relative, we took her to a private hospital in Bhubaneswar where the doctors advised not to worry and wait for a certain age when it will automatically be cured,” said Dilip Kumar Samal, the father.
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She continued to live with the condition till 2017 when her left eye popped out one morning when she was cleaning her face. Her parents rushed her to a private hospital at Cuttack. “After several tests including CT scan, the doctors conducted a surgery and brought the eye to normal position.
The doctors diagnosed that she is suffering from Cherubism and needs to be properly treated by expert hands. Citing that the patient is in grown up stage, they did not take the risk of surgery on her face,” said Dilip.
After the eye surgery, Bibhabari was normal despite the growth of her upper jaw. However on July 18, she experienced difficulty in opening her eyes as those were almost covered by jaw bones.
With no option left, her parents brought her to AIIMS, Bhubaneswar for further consultation. There is now a ray of hope for Bibhabari as the premier medical institution has agreed to treat the rare disorder.
“We are planning a surgery on the girl. Since it is a multi-disciplinary condition, the surgery will be conducted by a team of doctors comprising maxillofacial and eye surgeons besides a neurosurgeon.
A 3D structure of her face has already been created and the date for the first of its kind surgery will be decided after certain tests,” said an AIIMS official.
Dilip, who runs a photo-copy shop, has already spent over Rs 1.5 lakh for her treatment. He has written to Chief Minister Naveen Patnaik and Prime Minister Narendra Modi requesting them to extend a helping hand.