Region 3: USA Mid-West
Minnesota, Wisconsin, Illinois, North Dakota, South Dakota, Nebraska, Kansas, Iowa, Missouri, Arkansas, Oklahoma, Texas, Louisiana
Misty Powers
Green Bay, Wisconsin
Parent of Affected Child with HLD19
[email protected]
“Hello, my name is Misty Powers. I am from Green Bay, Wisconsin. My husband and I have 4 beautiful children, 3 boys and a girl. My youngest son was born in 2007 and was diagnosed with an unknown type of leukodystrophy. Our family reached out to the United Leukodystrophy Foundation for guidance. The United Leukodystrophy Foundation gave us tons of resources and tools.
We continued with genetic trials until we finally found the type of leukodystrophy. Testing identified a heterozygous de novo variant of uncertain significance in TMEM63A gene. My son finally got his type diagnosed this year (2024), sixteen years later. He has Hypomyelinating Leukodystrophy 19 (HLD19). I’m so honored to be the Wisconsin state Leukodystrophy Ambassador. I can remember just like yesterday when the word leukodystrophy was brought up at my baby’s doctor’s appointment. I didn’t even know what the word meant. My hope is I can help provide some soothing guidance and resources for our families. To let families know they are not alone and we are not giving up!”