Once more 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.