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
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