Luxton was born at 37 weeks gestation due to decreased fetal movement. As soon as he was born a code blue was called due to no fetal response. After 45 minutes they were able to get him stable. We were told they had no idea what was wrong as he couldn’t move his body, couldn’t breath well, and didn’t have a suck/swallow reflex. He received a Gtube for nourishment as he was only 5.1 pounds. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
He spent 102 days in nicu with no diagnosis. We took him home at 3.5 months and with time and therapy he started moving his limbs more but still had severe hypotonia. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
At 11 months we finally received a diagnosis through WES testing. It revealed he had centronuclear myopathy type 5. His condition is so rare that they haven’t been able to locate another case where the individual has the same gene mutation Luxton does. He just turned 1 and has mastered rolling all over the floor, can sit for short periods, and is the happiest baby. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
We were told he wouldn’t have qualify of life.
He continues to fight!
Luxton
