Aug 16, 2014

Mick Smith’s family is hoping to put a name to the progressive neuromuscular disease that is affecting this 12 year old triplet. Whole exome sequencing is the test that might give a name to his disease and possibly help doctors treat him. The knowledge gained from the test might not lead to a treatment or therapy but at least could help doctors manage his care.

This test is not always covered by insurance because it is so new and in fact the Smith family’s insurance is not covering the cost. They chose to do the test anyway and will get the results in a few more weeks and will then hopefully have a name and possibly a treatment for him.

: From top left, John Smith, 12, Grace Smith, 12, From bottom left, Michael Smith Jr., Martie Smith, 7, Mickey Smith, 12, and Cathy Smith, all of Gambrills. John, Grace and Mickey are triplets and siblings to Martie. Mickey has a progressive neuromuscular disease. (Rachel Woolf/Baltimore Sun)

: Mickey Smith, 12, smiles at his mother, Cathy Smith, both of Gambrills, at a fundraiser for Mickey’s genetic testing. Mickey has a progressive neuromuscular disease. (Rachel Woolf/Baltimore Sun)

: Michael Smith Jr. kisses his son, Mickey Smith’s face at a fundraiser for Mickey’s genetic testing. Mickey has a progressive neuromuscular disease. (Rachel Woolf/Baltimore Sun)

: Charlene Mamula, of Fairfield, PA, Cathy’s cousin, on left, adjusts Mickey Smith’s shoes while Mickey’s mother, Cathy Smith, looks on during a fundraiser for Mickey’s genetic testing. Mickey has a progressive neuromuscular disease. (Rachel Woolf/Baltimore Sun)

: Michael Smith Jr., prepares to wheel his son Mick Smith, 12, both of Gambrills, out of his room for “toy time.” Mick has an undiagnosed neuromuscular disease. (Rachel Woolf/Baltimore Sun)

: Martie Smith, 7, on left, puts large gloves on her brother, Mick Smith, 12, while their sister Grace Smith, 12, holds Mick’s arm. Mick has an undiagnosed neuromuscular disease. (Rachel Woolf/Baltimore Sun)

: Mick Smith, 12, on left, plays with toys while his mom Cathy Smith touches his head. Mick has an undiagnosed neuromuscular disease. (Rachel Woolf/Baltimore Sun)

: Michael Smith Jr., from left, kisses his son, Mick Smith’s head. Mick, 12, has an undiagnosed neuromuscular disease. (Rachel Woolf/Baltimore Sun)

: Michael Smith Jr., from left, fixes his son Mick Smith’s gastric feeding tube, while he lies in bed with his sister, Martie Smith, 7. Mick has an undiagnosed neuromuscular disease. (Rachel Woolf/Baltimore Sun)

: Michael Smith Jr. has his finger held by his son Mick Smith, 12, both of Gambrills. Mick has an undiagnosed neuromuscular disease. (Rachel Woolf/Baltimore Sun)

: Mick Smith, 12, on left, lies in bed with his sister, Martie Smith, 7, while Mick is fed by a gastric feeding tube. Mick has an undiagnosed neuromuscular disease. (Rachel Woolf/Baltimore Sun)

: Mick Smith, 12, on left, lies in bed with his sister, Martie Smith, 7, while Mick is fed by a gastric feeding tube and while they watch TV. Mick has an undiagnosed neuromuscular disease. (Rachel Woolf/Baltimore Sun)

: Mick Smith, 12, on left, lies in bed with his sister, Martie Smith, 7, while Mick is fed by a gastric feeding tube and while they watch TV. Mick has an undiagnosed neuromuscular disease. (Rachel Woolf/Baltimore Sun)

: Cathy Smith, holds her son, Mick Smith’s hand, while he lies in bed crying. Mick, 12, has an undiagnosed neuromuscular disease. (Rachel Woolf/Baltimore Sun)

: Cathy Smith, on left, holds her son, Mick Smith’s hand, while he lies in bed crying. Mick has an undiagnosed neuromuscular disease. (Rachel Woolf/Baltimore Sun)

: Michael Smith Jr., on left, lifts the blanket to look at his son Mick Smith, 12. Mick has an undiagnosed neuromuscular disease. (Rachel Woolf/Baltimore Sun)

: Mick Smith, 12, looks up while his mom Cathy Smith looks on behind him. Mick has an undiagnosed neuromuscular disease. (Rachel Woolf/Baltimore Sun)