Spinal muscular atrophy with respiratory distress type 1
Truett
Truett is technically undiagnosed, although some doctors at Childrens Hospital of Colorado and Johns Hopkins Hospital in Baltimore believe he has a unknown version of SMARD. On the SMARD gene, he has one variance and one "normal" spelling.
Truett had respiratory failure at 2 months of age due to the enterovirus. He lost the use of he legs at 3.5 months of age. He was trached and vented at 4 months of age. He became paralyzed from the neck down due to nerve damage by the age of 5 months. He received a gtube at 7 months of age. It is believed by his parents that monthly intravenous infusions of immuglobin blood makes him feel better and increases his range of motion. The theory is being tested by his neurologists at this time.
Truett has a public facebook page called "Truett's Voice."
Find people with Spinal muscular atrophy with respiratory distress type 1 through the map. Connect with them and share experiences. Join the Spinal muscular atrophy with respiratory distress type 1 community.