Friday , 29 August 2014
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South Florida women work to raise awareness of Rett Syndrome

South Florida women work to raise awareness of Rett Syndrome

UPDATES ON THE SEARCH FOR MEDICAL MIRACLES

The history of medicine can be seen in people working hand-inhand with scientists to raise awareness on the search for medical miracles, so here are some latest dispatches from the front.

Although I’ve been a health writer for nearly two decades now, I must confess I was ignorant about Rett Syndrome, that is until I met Gisel Gonzalez, of Miami, and learned about her sweet little girl Gia.

Although Gia appeared normal at birth, as she grew, her development slowed and Gisel, or Gigi, as she is known, began searching for an explanation. Doctors gave her several, but when Gia was three-and-a-half, she learned the truth; her beloved baby had been born with Rett syndrome.

Rett is a dreaded diagnosis. This rare neurological disorder is seen only in girls because boy babies who inherit it do not survive. But survival is not necessarily a blessing; girls with

Sabrina Cohen discussing medical innovations at Burke Rehabilitation Center.

Rett syndrome fail to develop in almost every meaningful way; they can’t talk, and they lack muscle tone and, hence, motor skills. They may also develop seizures, uncoordinated breathing and social anxiety.

It is a devastating diagnosis, but Gigi and her sister, Teri Rios, of Fort Lauderdale, are not giving up home. Instead, they are forming a nonprofit organization called “God’s Innocent Angels,” to raise awareness of Rett Syndrome and ultimately build a center to help other families.

On Oct. 13, they held a lavish Circus-based fundraiser at Briza on the Bay, but their efforts continue year around, so visit their web page, Gods Innocent Angels, at www.godsinnocentangels.org, where you’ll also find a link for more information on Rett syndrome.

Sabrina Cohen at the Women Doing Good Awards dinner in New York City

You can also watch a video of Gia on You Tube –just search for God’s Innocent Angels Rett Syndrome and it will pop up. Or simply Google my name, Examiner.com and Rett to read my full column about these remarkable women and the little girl for whom they fight. The video of Gia is unforgettable.

LOOKING FOR CURES FOR PARALYSIS

Speaking of medical miracles, those that come from the laboratory can be amazing, and today came news that the Nobel Prize for Medicine has gone to two scientists whose work are enabling researchers to “turn back time,” and fashion new cells to help cure disease. As the Wall Street journal put it, “The ability to pull off this trick-the biological equivalent of turning back time-ranks as one of the more head-spinning feats of modern science.”

Gia Gonzalez

No one is happier to hear this news than our own Sabrina Cohen, who just returned from her own headspinning trip to New York City, where she was honored as one of SELF magazine’s “Women Doing Good.” There, she was treated to a makeover, appeared on the Today Show and was honored at a tribute dinner alongside celebrity winner Jessica Alba.

But parties were not the only things on Cohen’s mind in Manhattan. That week, she also traveled to White Plains, New York, where she was an invited guest at the ribbon cutting of the new neuroscience building at the Burke Rehabilitation Center in White Plains. Once traditionally focused on rehabilitation, Burke has spent $7 million on its new regenerative medicine laboratories to bridge the gap between medical research and those working with patients to find new methods and techniques to help in the treatment of neurological ailments like paralysis, Parkinson’s disease and stroke.

By the way, this Halloween marks the 20th year that Cohen was injured in a disastrous car crash on Alton Road, when the car the 14 year-old was riding in struck a tree. The accident was the result of a drag racing accident, and, ever since then, Cohen has spent a good portion of her time speaking to other youngsters about staying safe.

Medical history is written of miracles, so we can only hope and, in the meantime, do all we can for the scientists working to find cures for Rett Syndrome and paralysis.

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