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