Texas teen overcomes rare disease to walk again

Brooklyn Brumfield was 16 when she was given a grim
prognosis. She would likely spend the rest of her life in
treatment and would need physical therapy. Her illness
rapidly progressed, and one year later, she became
paralyzed from the waist down, unable to stand and
totally numb. She was wheelchair-bound and, on many
days, bed-ridden.
Within a year, her parents, McCullough Junior High School
theater teacher Keith and his wife Bari, saw their daughter
change before their eyes from their little girl who loved
horseback riding to a child who was barely able to get out of
bed.
Brooklyn was diagnosed with the rare genetic disorder
Ehlers-Danlos Syndrome, which affects the body's
connective tissue. Gravity would pull her hyper flexible
joints out of place even when she lay still. She became so
feeble that she was unable to even lift a pencil. And
although Brooklyn stayed positive for herself and for her
family, some days were trying.
"I forgot how it feels to walk," Bari recalled her daughter
saying during her darkest hours.
Earlier this year, Bari had just one wish: That Brooklyn
could walk again.
The Woodlands First Baptist Church, McCullough choir kids,
The Woodlands High School improv troupe and French club,
and others in The Woodlands community held fundraisers
for the Brumfields earlier this year so Brooklyn could get
the life-changing treatment she needed. Together, the
community raised nearly $100,000 for her stem cell
replacement therapy.
"We didn't have $100,000. We couldn't borrow it.
We couldn't sell anything to get it. My prayer was
that if this stem cell was something we were
supposed to consider …it was going to have to rain
money," Bari said.
Brooklyn, now 18 and attending college online, has seen a
near complete reversal of her symptoms. Where once she
had fainting spells and dislocated bones 20 or more times a
day, those numbers have climbed down to once a week, if
that. And she could walk again, even in short heels. She
could put on her own makeup. She could drink a cup of
water by herself. She could do the little things that most
people take for granted. She no longer needed leg braces
and shoulder-high hiking sticks, which she used as a crutch
before becoming wheelchair bound.
Bari still remembers what her previous doctors said when
they diagnosed Brooklyn. Now, the memory, though still
fresh, seems so far away.
"We're not content with people telling us that you
have to lay down all day, sit up all day and they
have them consuming all this salt. There's so many
things," Bari said. "They basically said that she
would have to have therapy all of her life, and it
was such that we'd have to learn to live with it.
That was basically what we were told."
The treatment that Brooklyn underwent through Sugar
Land-based Celltex Therapeutics isn't approved by the
Federal Drug Administration. So the pair flew to Cancun
for the stem cells to be administered.
"Who's right or wrong is really kind of insignificant
when you're sick. You don't care. Should we wait?
Should we do it now? When you're sick, you want to
do it and get it done," Bari said.
The stem cells were created from Brooklyn's fat cells and
grown in a laboratory. Undergoing the treatment was
physically difficult. After her first round of treatment,
she felt the paralysis rise above her navel, and she
experienced difficulty breathing at times, too, Brooklyn
recalled.
"I felt really bad after the first treatment. I
couldn't really talk much because my brain was so
overwhelmed. It was like living in a fog," Brooklyn
said.
The pair were set on returning home, unsure of what to
make of the therapy that they bet so much on. But two
weeks later, Brooklyn could hardly believe it. She started to
regain feeling in her toes and, eventually, her legs.
"One morning, I woke up, and I could move my toes.
It was so exciting," Brooklyn said, the words quickly
tumbling out as she fondly recalled the memory.
"It hurt because I could feel like every connection
happening."
She would eventually battle between losing and regaining
feeling until one day, while reading in her Bible, she was
inspired by the verse in Corinthians that goes, "For we walk
by faith, not by sight." That was her turning point, and, as
she recalls, that's when she walked again for the first
time.
Now, she completed her second round of treatment in
Cancun in November. Though slight, she now stands tall and
firmly erect, again.
"I think a part of the reason that I am (standing)
is because I did imagine it. I pictured myself doing
it. I was like I'm going to be there someday. I
didn't know that it would be this soon, but I knew I
would. I never thought 'Oh, this is me forever,'"
Brooklyn said.
For Mona Nahhas, manager of client services at Celltex
Therapeutics, seeing Brooklyn's transformation was an
affirmation of what the company strives to do.
"You just talk about chills to see that drastic of a
change," Nahhas said.
But Nahhas also said that it's important to come into
treatment with realistic expectations and that everyone
reacts differently to treatment.
"We don't claim that stem cells can fix everything
in the whole world, but we do know where it has
been very succesful," Nahhas said. "You just want
to tell everyone that they have that potential within
their own body for it to heal itself."
The Brumfields were able to raise enough money for three
rounds of treatment. Brooklyn and her mother are
expected to fly down in the spring for what they hope will
be the third and final time.
They don't know what the treatment's recidivism rate is
and whether Brooklyn's paralysis will return, but they're
hopeful that Brooklyn is back for good.
Source: Houston Chronicle