A toddler with an extremely rare genetic condition had his skull broken and fitted with springs in order to make sure that his skull grows.
Coban Sykes, 19 months old, is affected with Muenke syndrome. The extremely rare genetic disorder affects just one in 30,000 children. Though rare, it is extremely serious. Coban, and other children with the disorder, was born without a soft spot in his skull. This meant that his skull could not accommodate his brain, which grows for three years after birth.
In order to ease the pressure on Coban's skull, he underwent a four-hour surgery that has left him with 85 stitches and delicately attached section of his skull. The piece of skull could move, doctors have warned, which could expose parts of his brain or cause part of his head to be left flat.
Though the treatment may seem difficult, without it, Coban would likely become deaf and blind. Already, in September, Coban's eye had begun deteriorating, which made the surgery a necessity for the family.
The procedure is only temporary, however. In six months, Coban will need to return to the hospital in order to have the same procedure done once again, in order for the skull to once again be refitted to accommodate the boy's brain.
The procedure has made things complicated for the young family. As Coban's mother described to the Daily Mail, his head is "like a sponge", and the family has had to pad every room to stop the toddler from hurting himself. He cannot wear a helmet, because the headgear would misshape his head and cause further problems in the future. Making sure that Coban does not hurt himself is a 24-hour job, as a family member has to constantly follow the child around to make sure that he does not hurt himself. This responsibility is made even more difficult because Coban has two young sisters as well, who are seven and five.
Sufferers of Muenke syndrome typically have an abnormally shaped head, wide-set eyes, and flattened cheekbones. About 5 percent of sufferers have an enlarged head, and some may also have mild abnormalities of the feed and hands. Though most sufferers of the syndrome are developmentally normal, some suffer from disabilities and developmental delay.
The disease is inherited from a parent. About 6 to 7 percent of people with the gene do not show signs of the disorder.
The family has a website to which you can send donations.