Brain Surgery for 9 year old Talan

Talan Lizotte, age 9, was recently diagnosed with a genetic condition called DYT1 dystonia. Dystonia causes involuntary, sustained muscle contractions that result in twisting of the limbs. The age of onset for this type of dystonia is usually between nine and eleven years old. When the symptoms start in the leg, they usually will progress to the rest of the body, causing the person to become severely debilitated. There is no cure. Talan's condition began in his leg, with twisting seen in his leg while running. In October he was able to run one mile. He made the travel basketball team but ended up breaking his ankle due to his dystonia. Since he broke his ankle, his symptoms have progressed rather quickly. He currently has to use crutches at school and a wheelchair for longer distances. He was referred to Boston Children's Hospital Neurology and they recommended a surgery called deep brain stimulation (DBS). This surgery will implant electrodes in his brain that will, hopefully, change the signal going from his brain to his muscles. The surgery can result in 80-90% improvement if successful. Talan will be having the surgery on July 5, 2016. He has had several appointments for MRI's, to trial a brace for his leg, and consultations with the surgeon. Unfortunately, most of these appointments have to be done in Boston. This has resulted in financial strain for his parents, as it is too much for Talan to make the trip in one day. His parents try to stay at a hotel with a pool, as this is the one physical activity that Talan can still participate in. The expense has been significant due to his medical bills, hotel stays, cost of gas, and food. Any donation would be greatly appreciated for this wonderful family. ♡