Jackson Lange

Jackson’s bio…based on information from an article on mycentraljersey.com in 2015, Mom and Dad

Jackson is an amazing, happy and truly a special soul. Now 3 years old, when Jackson was just 8 months old he required amputation surgery for a rare disorder. Jackson was diagnosed with fibular hemimelia, a rare bone disorder that is found in only one in 40,000 people, fibular hemimelia affects the legs and feet. In Jackson’s situation, he was born without a fibula, anterior cruciate ligament (ACL) or a medial collateral ligament (MCL). Further, the head of the tibia in the knee joint was deformed which causes the knee to dislocate.

13 weeks into the pregnancy,  doctors noticed something was not right. “The doctors saw something wrong on the ultrasound, but didn’t know what it was,” Lange said. “They were not specialists in this. They thought it could spina bifida. That was very scary.”  An amniocentesis showed the condition was not spina bifida, but they needed a diagnosis. “We started researching and first went to CHOP where they told us a diagnosis,” he said. “After all the testing — amnio, genetic — and they figured it out. It was basically a relief. Then we got three different opinions at Boston, Baltimore and CHOP and the different surgery options.”

“We were first told about the limb lengthening,” Dad said. “That would take about six surgeries, each time he would be in a fixator for four to six months and need physical therapy. It would last until he was a teenager. At that point it might stop, but there was no guarantee. We got to thinking that the time frame was too much.” The amputation option offers “a quicker recovery.”

Fibular hemimelia is not genetic and it is unknown why it occurs.  Additionally, fibular hemimelia involves poor circulation to the lower extremities, but because of the amputation, Jackson’s condition most likely will not get any worse “We just wanted him to be healthy,” Dad said. “This is isolated to his leg and does not affect any other part of his body. He is a healthy boy in every other way.”