His parents, Matt and Gina Hann,
fi gured he was just a little clumsy
or was running around faster than
he should. Soon they discovered he
could no longer identify letters of
the alphabet on an eye chart he had
in his room. Something was wrong
with his vision.
Joseph got glasses, but no pre-
scription seemed quite right.
A trip to a specialist in Phoenix
revealed a retinal abnormality,
which suggested that Joseph was
suff ering from a degenerative eyentil he was three and a half years
old, Joseph Hann didn’t seem so
different from any other kid his
age. He loved swimming, riding
his balance bike, trick-or-treat-
ing at Halloween. Then he began
bumping into things around his
family’s home in Tucson, Arizona.disease. There was a good chance,
the Hanns were told, that the boy
would go blind.
Matt and Gina resolved to fill
however many days of sight their
son had remaining with as many
vivid memories as they could.
They booked a trip to Disneyland
for Joseph and his three siblings.
But a week before they were set to
travel to California, Joseph was
sitting in his dad’s lap playing with
an iPad when he collapsed into a
grand mal seizure, the muscles
of his body violently contracting
as he temporarily lost conscious-
ness. It lasted more than thirty
seconds. “He hit the fl oor,” Matt
remembers, “and then he kind of
woke up from it with that look of
‘What just happened?’”
They rushed Joseph to a near-
by hospital, where an emergen-
cy-room neurologist thought he
recognized the root of the boy’s
problem. Just a couple weeks ear-
lier, the doctor had read a paper
about a rare genetic disorder of
the nervous system. Hearing that
Joseph wasn’t as agile as the oth-
er Hann children, was losing his
sight, and now had suff ered a sei-
zure, the doctor suspected Batten
disease. There are fourteen types
of Batten, and all are fatal, nearly
all in childhood. A test to look for
mutations in Joseph’s genes would
be necessary to determine wheth-
er the neurologist’s suspicion was
correct, but the results wouldn’t
be available for six weeks.
The Hanns didn’t just wait
around for the diagnosis. They
went ahead with the Disneyland
trip. (“I was a mess,” Gina says, “but
the kids thought it was the happiest
place on earth.”) By the time they
returned, they had decided to leave
Tucson and move wherever Joseph
could fi nd the best care.
Dallas was an early front-run-
ner. Gina and Matt are longtime
employees of Texas InstrumentsU
Two Teaspoons of Hope
New gene therapy technology puts UT Southwestern
on the cutting edge of fighting rare, fatal childhood diseases.5454 TEXAS MTEXAS MONTHLYONTHLY
MEDICINE by Jason Heid (^) • illustration by Emiliano Ponzi
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