Twin brothers Luis and Kian King’s were born with a deadly disorder that was attacking their nervous system. Thankfully, a stem cell transplant saved the twin boys, giving them a chance at a healthy and happy life. Here is their story.
Nine months ago, the two boys were diagnosed with Juvenile Krabbe disease, a deadly illness that was damaging their nervous system. It is a rare and often fatal degenerative condition. The condition occurs when sphingolipids, an important component of the body which allows cells to communicate, are dysfunctional.
The dysfunctional sphingolipids affect the myelin sheath of the nervous system. Symptoms of the disease initially include irritability, fever, feeding difficulties and impaired motor skills. As the disease progresses and damages the nervous system, it can result in devastating symptoms including blindness, deafness, spasticity, blindness, and paralysis. The disease affects approximately one in a million children.
Their only hope of curing the disease was to receive a stem cell transplant — a treatment that had only been performed once in the United States. The boys couldn’t find a compatible donor initially, so their parents turned to the media, asking people to register as donors. More than 9,000 new potential donors registered with stem cell banks after their pleas.
Within a few weeks they had found two possible umbilical cord blood donors! The twins received their transplant in May, 2015 and are now doing very well. They have just celebrated their 8th birthday.
After the stem cell transplant, their bodies began to produce the missing myelin enzyme which will stop the disease’s progression. It hasn’t been an easy path for the boys, who were born 3-months premature in 2007. When they were born they had bleeding on the brain and doctors diagnosed them with cerebral palsy. Doctors only realised it was actually Krabbe disease in late 2014.
Their treatment involved the use of chemotherapy to impair their immune system, so it didn’t attack the freshly transplanted stem cells. The stem cell transplant saved the twin boys and gave their parents hope for the future.
Source: People signing the stem cell donor register saved my twin boys’ lives
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