A family from Tucson hopes relocating to North Texas will be the move that saves their child's life.
5-year-old Joseph was diagnosed with Batten disease, a rare and fatal neurodegenerative disorder. Her family moved to partner with doctors at UT Southwestern Medical Center for what could be a breakthrough in his treatment.
5-year old Joseph Hann is the third oldest of Matt and Gina Hann's four children. Less than a year ago, doctors confirmed a terminal diagnosis for their little boy.
Batten disease is a degenerative genetic disorder, and Joseph’s is one of the rarest forms. He has already lost much of his vision. He can only six inches in front of him.
"He takes everything from one moment to the next,” Matt said. “Does what he can, and he's happy doing it. "
The family moved from Tucson, Arizona, to Southlake, Texas, to take part in a new gene therapy trial at UT Southwestern.
“Without a doubt whenever we realized what we were up against, the decision was instantaneous getting here quickly was first and foremost,” Matt said.
The family is having to raise money for the treatment. They've raised $800,000 of the $1.2 million required.
"Despite the challenges, we really believe every day is a gift,” Gina said.
The family's UT Southwestern physician has described the new gene therapy trial as ‘the use of technology to transport a missing gene back to Joseph's brain.’