Abu Dhabi: Muntaha Mohammad, now nearly a year old, was born in January 2016 with a rare condition that caused deformities in her hands and feet.
Afflicted with tibial hemimelia, she has only four fingers on her left hand and three on her right.
In addition, she has only two toes on each foot and no tibia (the larger, inner bone located between the knee and the ankle). As a result her legs are curved inwards.
As Gulf News reported in May, the condition only affects one in a million babies worldwide, and was not detected before birth.
Somia Khadir, her 33-year-old mother from Pakistan, told Gulf News that Muntaha was born after nearly five years of marriage, and that she and her husband were at a loss when they first saw her condition.
Only a handful of surgeons around the world can help Muntaha regain better limb function, but none of them are based in the UAE. Khadir was finally able to contact one of them, a doctor in Florida who specialises in limb lengthening, reconstruction and joint preservation. She sent over the medical reports and, after analysing them, the doctor said he was willing to undertake the corrective procedures.
But the treatment and its associated therapies will cost at least Dh850,000.
Khadir and her husband’s lack of finances then became a major roadblock to Muntaha’s development. As Khadir said then, her husband, a restaurant business development manager, brings home only about Dh3,900 each month.
Update
As a happy, smiling baby, Muntaha is managing to reach all her milestones. She is only puzzled when she tries to walk, Khadir said.
“She crawls on her own, and balances herself on her knees but cannot move them as easily as she would like. Other than that, my daughter is quite vocal and we would love to give her a normal life,” she added.
Following the initial report in Gulf News, the family received Dh156,000 in donations. And while Muntaha’s parents are tremendously grateful, they know that it is only a drop in the bucket towards getting their daughter the treatment she needs.
“I am in constant touch with the specialist in Florida. He has stressed Muntaha needs to undergo the corrective surgeries between 15 and 18 months of age. But we do not yet have the funds to finance the treatment, let alone the travel and accommodation expenses to the US,” Khadir said.
If they can gather the funds, Muntaha will have to undergo a a two-step, three-surgery procedure. According to a consult sent by the specialist, the first step will attach an external fixator, a device to connect and support the bones of the leg and the foot, on each limb. With daily adjustments to the device, it will gradually straighten Muntaha’s knees and foot over a period of nearly five months.
