Holden Green, a 14-year-old freshman at Oak Park and River Forest, has, along with his two brothers, Harrison and Davis, has a rare primary immune disease called x-linked agammaglobulinemia (XLA).
Because of the disease, Holden said, he and his brothers “can’t be in situations where there’s a sickness going around, and if we get sick it can be possibly fatal.”
Recently, Holden entered the RareArtist contest, for artists with rare diseases, and won one of two prizes in the teen division.
His winning photo, called “Old and New,” shows Maggie Daley Park in Chicago during the day — something of a testament to the young photographer’s willingness to get out into the world despite his physiological limitations.
Earlier this month, Holden and other winners were honored in Washington, D.C., at a reception held in the Kennedy Caucus Room of the Russell Senate Building. The reception was held in conjunction with the Rare Disease Legislative Advocates Rare Disease Week on Capitol Hill.
The week allows patients, families and other advocates to push for better treatment, research and diagnoses of rare diseases.
“We were lucky enough to be on Capitol Hill when the House and Senate were both in session,” said Holden’s mother, Sonia. “In a time when it is so critically important for teens to stand up and speak up, this was a great opportunity to get their voices heard.”
Michael Romain
