A fighter from the start
Owen's mom, Hope, is a single mother of three boys who works as an EMT. Owen was born with a congenital heart condition, and around 15 months his family noticed delayed walking, low muscle tone in his lower legs, and drop foot. Over time came toe curling, sensitivity to texture and temperature, and tightening in his hands.
A long road to diagnosis
After more than 18 months and two rounds of genetic testing, Owen was diagnosed with CMT4A caused by the GDAP1 gene in October 2019. His neurologist described it as a very aggressive, rapidly progressing neuropathy with no cure yet available.
Holding out for a cure
Owen has very limited muscle tone below the knees and in his hands and wrists, so he uses walking support and ankle-foot braces, and his hands stay semi-clenched, which makes writing, feeding, and dressing hard.
His family's hope is simple: that a cure is found and that Owen can lead a normal life.