Jahan Adam, 6, left, and Arshaan Adam, 8, pose for a portrait in the bedroom of their home on Saturday, Jan. 28, 2017, in Elkhorn, Nebraska. The brothers have an extremely rare disease caused by a genetic mutation that affects their bones.
Arshaan Adam, 8, rides his motorized wheelchair at his home on Saturday, Jan. 28, 2017, in Elkhorn, Nebraska.
Arshaan Adam, 8, left, and Jahan Adam, 6, right, sit on Jahan's bed on Wednesday, March 8th, 2017, at their new home in Elkhorn, Nebraska. As the boys grow, they have to undergo numerous surgeries in order to correct the bends in their bones so that they are able to walk.
Arshaan and Jahan tell each other secrets before undergoing their second round of pamidronate intravenous infusions, used to regulate high blood calcium levels, at Children's Hospital & Medical Center on Wednesday, Feb. 15, 2017, in Omaha, Nebraska.
Arshaan Adam, 8, plays the piano during a lesson at the Omaha Conservatory of Music on Cass St., on Saturday, Jan. 28, 2017, in Omaha, Nebraska.
Neena Nizar, left, helps her son Jahan Adam, 6, out of their van, as Arshaan Adam, 8, right, waits his turn, on Saturday, Jan. 28, 2017, before piano lessons at the Omaha Conservatory for Music on Cass St., in Omaha, Nebraska. Neena and her two sons account for 3 of the 5 confirmed cases of Jansen's in the United States.
Arshaan Adam, 8, left, and Jahan Adam, 6, right, climb onto a windowsill to look at the view from their hospital room window at Children's Hospital & Medical Center on Wednesday, Feb. 15, 2017, in Omaha, Nebraska.
Nurses attempt to connect an IV to Arshaan Adam's left arm before starting his second round of pamidronate intravenous infusions at Children's Hospital & Medical Center on Wednesday, Feb. 15, 2017, in Omaha, Nebraska.
Arshaan Adam, 8, plays the piano during a lesson at the Omaha Conservatory of Music on Cass St., on Saturday, Jan. 28, 2017, in Omaha, Nebraska.
Arshaan Adam, 8, rides the bus home from Hillrise Elementary School with his brother, Jahan Adam, 6, on Tuesday, Jan. 31, 2017, in Elkhorn, Nebraska.
Arshaan Adam, 8, left, and Jahan Adam, 6, right, explore the gift shop at Children's Hospital & Medical Center before undergoing their second round of pamidronate intravenous infusions, used to regulate high blood calcium levels, on Wednesday, Feb. 15, 2017, in Omaha, Nebraska.
There are five people in the United States that live with Jansen's Metaphyseal Chondrodysplasia. Neena Nizar and her two sons, Arshaan and Jahan, account for three of the five confirmed cases. The rare disease causes the bones in the body to bend. As new bone forms, the same problem occurs. A doctor in Boston has developed a promising treatment in mice with the same genetic mutation that causes Jansen's. The treatment could halt the progression of the disease as well as make the bones strong enough for corrective surgeries. But getting the drug approved for human trial could take years and millions of dollars. For the boys, time is running out - to be most effective, Arshaan and Jahan will need the treatment before they hit puberty, when bones grow the fastest. Story by Mara Klecker/Omaha World-Herald