Mahendra Ahirwar, a 12-year-old boy living in India, will soon is able to have surgery to correct his neck, which leaves his the top of his head pointing at his feet. The boy suffers from an extremely rare “muscle-wasting disease” that leaves his neck muscles unable to support his neck, which severely hinders his quality of life.
Mahendra’s condition is described as a muscle-wasting disease that has prevented his muscles from developing. His neck muscles are especially affected and are unable to support the weight of his head. As a result, his head hangs down onto his chest. The other muscles in his body are also under-developed, leaving Mahendra unable to walk or perform many simple tasks.
The Gift of Charity
In April 2015, Mahendra’s story was covered by several UK-based media outlets. At that time, the boy’s parents, Mukesh and Sumitra Ahirwar, did not have the money to pay for surgery to help treat his condition, and were all out of options. “I wonder if death is the only treatment left to end his misery,” his mother was quoted as saying.
After the articles on Mahendra’s condition were published, a UK-trained doctor who had since moved to India reached out to the Ahirwar family and offered to perform surgery on Mahendra’s neck pro bono. The family would still be left with the medical bills from the hospital, however, and Mahendra’s father is a poor laborer who would not be able to afford it. Fortunately, the media attention given to Mahendra reached a woman in Liverpool, who started a Crowdfunder to pay for his surgery. The page exceeded their goal of £10,000 in just 28 days, so now Mahendra will be able to undergo this vital procedure.
A Complex Neck Surgery
The surgery itself will likely prop up Mahendra’s head through bracing in his neck. Because the boy’s neck does not have muscles with strength to support the weight of his head, the surgeon must add structure to the spine instead, likely through the process of spinal fusion.Spinal fusion is the process of fusing two to three vertebrae together through bone grafts that are held in place by metal rods and screws. Over time, the graft grows into place and binds the bones of the spine together.
After spinal fusion surgery, the patient usually is required to wear a brace for six to eight weeks while the graft grows into place. The process can limit range of motion in the neck, but in Mahendra’s severe case, the primary goal is for him to be able to hold his head upright.
Looking Toward the Future
Once Mahendra receives the surgery and heals, he is most looking forward to attending school: “I only want to go to school. I want to play and read books.” Mahendra has also been the victim of teasing from his peers for his condition, but he hopes that will stop after the surgery. Thanks to one surgeon, a school career coordinator from Liverpool, and dozens of donors, Mahendra is looking forward to the future again.