Brain Disorder Shared By Siblings Brings Family Closer

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    NEWSLETTERS

    Three siblings are diagnosed with the same rare brain disorder.

    The Rodriguez siblings share more than family ties.

    "They look normal. You could never tell something's wrong with them. However, they can't do what other children do," said Brenda Rodriguez, mother of Alexa, 16, Alyssa, 14 and Carlos, 12.

    It began when Alexa started to complain about headaches. They were more painful that a regular migraine and when the pain was really bad, Alexa would vomit.

    "The pediatrician immediately knew that something was wrong and sent her for an MRI," said Brenda Rodriguez.

    Siblings Share Rare Brain Disorder

    [DFW] Siblings Share Rare Brain Disorder
    Three siblings are diagnosed with the same rare brain disorder.

    "It got to the point where I would get headaches and I couldn't see and I would run into walls," said Alexa Rodriguez.

    She was diagnosed with Chiari malformation, a brain deformation that affects the cerebellum, the part of the brain that affects balance.  According the National Institute for Neurological Disorders and Stroke, chiari malformation happens when the cerebellum and brain stem can be pushed downward into the upper spinal canal, which may affect functions controlled by these areas and block the flow of cerebrospinal fluid. Cerebrospinal fluid surrounds and cushions the brain and the spinal cord.

    Alexa needed to get brain decompression surgery to relieve pressure near the base of her skull.

    For Alexa's younger sister, Alyssa, watching her big sister go through surgery was tough.

    Alexa felt some relief from her symptoms, but knows they will never go away.

    Because Chiari malformation is often genetic, doctors tested Alyssa and Carlos. They, too, were diagnosed with the disorder.

    To complicate matters, Brenda was dealing with her own medical problems.

    "Right after Alexa's surgery, I had colon cancer. I've been three years cancer-free. Thank God," said Brenda Rodriguez.

    For Brenda, it felt like the hits just kept coming and the emotional and financial pressure was almost overwhelming.

    Her faith has gotten her through the tough times and she got a part time job selling home decor to help pay for the families growing medical bills.

    Though Alyssa was diagnosed with the disorder, she has been asymptomatic thus far.

    But Carlos' symptoms have worsened.

    "I had leg pain and my head started hurting a lot, to the point where I would cry," said Carlos.

    He also was diagnosed with tether cord, which, according to NINDS, is a progressive disorder that causes abnormal stretching of the spinal cord and can sometimes result in permanent damage to the lower legs and body, if not treated.

    Carlos will undergo surgery to treat tethered cord and brain decompression, the same surgery his sister had, just three days before his 13th birthday.

    The 12 year old loves football and soccer, but doctors forbid all three children from playing any contact sports.

    "We don't feel that we're not normal but we do have limitations. There's certain things that we cannot do," said Alexa.

    "Because we'll die. We can't go ice skating, roller blading, anything that could harm our head," said Alyssa.

    It has been a tough time for the Rodriguez family, but the struggle has also brought the family closer.

    "Just put our faith in God, that's the only thing we can do," said Brenda Rodriguez.

    "She tells me I can do it, she encourages me, " said Carlos, about what Alexa told him about the brain decompression surgery.

    "We've all helped each other get through it," said Alexa.

    Donations for medical expenses can be made at BBVA Compass Bank to the Carlos Eduardo Rodriguez Medical Account.