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Within 24 hours Lillee was diagnosed with
moyamoya, a very rare and very serious disease.
The disease causes the carotid arteries, located at
the base of the brain, to become narrowed over
time, restricting flow of blood to the brain.
“Lillee had had a stroke,” explains Deborah.
“The doctors told us she had had previous
strokes as well, likely before we got her.”
Lillee had a difficult surgery on her brain. The
revascularization surgery connects a scalp artery
directly to the middle brain (cerebral) artery in
order to increase blood flow to the brain. “It’s
basically a brain by-pass in hopes that blood flow
could be re-established to parts of her brain,”
says Deborah. The procedure was particularly
difficult with Lillee because moyamoya causes
the blood vessels to be constricted. “It was so
hard to get an IV line in her because her blood
vessels were so tiny. It was difficult to explain to
Lillee, who had turned five while in the hospital,
what was happening to her.”
When Lillee and Steven spoke with people at
Make-A-Wish, they told them that Lillee
wanted to go to Disney World. “We were making
plans to go to Disney World before she got sick,”
Deborah says. “As a matter of fact, we were
supposed to be there while she was in the hospital.”
It was decided that when Lillee got better, the
family would make the trip to Disney World
together. “That was a big carrot for Lillee. She
went through such a hard time and the trip was
her encouragement to be brave.”
And Lillee was so very brave. She endured
many pricks, pokes, and other uncomfortable
procedures, but she knew that if she was brave,
she could go to Disney World. That day finally
came in January 2020. Lillee and her parents
and three sisters and one brother piled into their
vehicle and headed to Orlando. “Make-A-Wish
would have flown us there, but we were
concerned about how the pressure in the plane
might affect Lillee’s brain,” Deborah explains.
They checked into the Give the Kids the World
hotel, designed specifically for Make-A-Wish
kids. “That place was great in itself,” recalls
Deborah.
For seven days, the family forgot all about
doctors and hospitals and procedures and had
fun at Disney World. “Lillee rode every ride she
could for her size, sometimes twice,” laughs
Deborah. “She is such a little daredevil – she
loved every minute of it!” During their stay in
Orlando, the family also visited the dolphin
enclosure at Sea World, and went to Universal
Studios, where she again rode as many rides as
she could. “We had gold-colored Make-A-Wish
bracelets that allowed us to go the front of the
line. It was amazing!” The family experienced
pure joy at the parks, forgetting all they had been
through in the previous couple of years.
“Make-A-Wish really spoiled us. Everything was
taken care of, and I never had to say no if one of
the kids wanted something. We came home with
lots of souvenirs. I will be forever grateful for
what they did for our family.”
Lillee is the baby of a large family. Her sister,
Katherine, is in graduate school in California,
studying to become a speech pathologist. Her
brother, John, is a student at Ole Miss. Sisters
Karlie (13) and Taylor (12) are homeschooled
along with Lillee. “Taylor loved the Disney
experience as much as anyone,” says Deborah.
“She has Down syndrome, and it’s all magic to
Taylor!”
For now, Lillee is “very stable” and doing well.
Moyamoya is a lifelong disease, and she’ll need to
have checkups yearly. It is hoped that Lillee will
progress normally and enjoy activities with her
family, such as traveling. “We love to travel,” says
Deborah. “We are planning a ‘glamping’ trip to
South Dakota, depending on what happens with
Covid. We also travel to Colorado each summer
to see my mother and brother.” But no matter
where they go in the future, they’ll always be
thankful to Make-A-Wish for the trip of a
lifetime. “And we are grateful that Lillee was so
brave so that we could go!”
Hometown MADISON • 71