[Congressional Record (Bound Edition), Volume 155 (2009), Part 5]
[Extensions of Remarks]
[Page 6598]
[From the U.S. Government Publishing Office, www.gpo.gov]




                          I MUST SAVE MY CHILD

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                           HON. ED PERLMUTTER

                              of colorado

                    in the house of representatives

                        Thursday, March 5, 2009

  Mr. PERLMUTTER. Madam Speaker, I submit the following for the Record.

                      [From Parade, Feb. 15, 2009]

                          I Must Save My Child

                        (By Melissa Fay Greene)

       WHEN SUSAN AXELROD tells the story of her daughter, she 
     begins like most parents of children with epilepsy: The baby 
     was adorable, healthy, perfect. Lauren arrived in June 1981, 
     a treasured first-born. Susan Landau had married David 
     Axelrod in 1979, and they lived in Chicago, where Susan 
     pursued an MBA at the University of Chicago and David worked 
     as a political reporter for the Chicago Tribune. (He later 
     would become chief strategist for Barack Obama's Presidential 
     campaign and now is a senior White House adviser.) They were 
     busy and happy. Susan attended classes while her mother 
     babysat. Then, when Lauren was 7 months old, their lives 
     changed overnight.
       ``She had a cold,'' Susan tells me as we huddle in the 
     warmth of a coffee shop in Washington, D.C., on a day of 
     sleet and rain. Susan is 55, fine-boned, lovely, and fit. She 
     has light-blue eyes, a runner's tan, and a casual fall of 
     silver and ash-blond hair. When her voice trembles or tears 
     threaten, she lifts her chin and pushes on.
       ``The baby was so congested, it was impossible for her to 
     sleep. Our pediatrician said to give her one-quarter of an 
     adult dose of a cold medication, and it knocked her out 
     immediately. I didn't hear from Lauren the rest of the night. 
     In the morning, I found her gray and limp in her crib. I 
     thought she was dead.
       ``In shock, I picked her up, and she went into a seizure--
     arms extended, eyes rolling back in her head. I realized 
     she'd most likely been having seizures all night long. I 
     phoned my mother and cried, `This is normal, right? Babies do 
     this?' She said, `No, they don't'''
       The Axelrods raced Lauren to the hospital. They stayed for 
     a month, entering a parallel universe of sleeplessness and 
     despair under fluorescent lights. No medicine relieved the 
     baby. She interacted with her parents one moment, bright-eyed 
     and friendly, only to be grabbed away from them the next, 
     shaken by inner storms, starting and stiffening, hands 
     clenched and eyes rolling. Unable to stop Lauren's seizures, 
     doctors sent the family home.
       The Axelrods didn't know anything about epilepsy. They 
     didn't know that seizures were the body's manifestation of 
     abnormal electrical activity in the brain or that the 
     excessive neuronal activity could cause brain damage. They 
     didn't know that two-thirds of those diagnosed with epilepsy 
     had seizures defined as ``idiopathic,'' of unexplained 
     origin, as would be the case with Lauren. They didn't know 
     that a person could, on rare occasions, die from a seizure. 
     They didn't know that, for about half of sufferers, no drugs 
     could halt the seizures or that, if they did, the side 
     effects were often brutal. This mysterious disorder attacked 
     50 million people worldwide yet attracted little public 
     attention or research funding. No one spoke to the Axelrods 
     of the remotest chance of a cure.
       AT HOME, LIFE SHAKILY returned to a new normal, interrupted 
     by Lauren's convulsions and hospitalizations. Exhausted, 
     Susan fought on toward her MBA; David became a political 
     consultant. Money was tight and medical bills stacked up, but 
     the Axelrods had hope. Wouldn't the doctors find the right 
     drugs or procedures? ``We thought maybe it was a passing 
     thing,'' David says. ``We didn't realize that this would 
     define her whole life, that she would have thousands of these 
     afterward, that they would eat away at her brain.''
       ``I had a class one night, I was late, there was an 
     important test,'' Susan recalls. ``I'd been sitting by Lauren 
     at the hospital. When she fell asleep, I left to run to 
     class. I got as far as the double doors into the parking lot 
     when it hit me: `What are you doing?''' She returned to her 
     baby's bedside. From then on, though she would continue to 
     build her family (the Axelrods also have two sons) and 
     support her husband's career, Susan's chief role in life 
     would be to keep Lauren alive and functioning.
       THE LITTLE GIRL WAS AT RISK OF falling, of drowning in the 
     bathtub, of dying of a seizure. Despite dozens of drug 
     trials, special diets, and experimental therapies, Lauren 
     suffered as many as 25 seizures a day. In between them, she 
     would cry, ``Mommy, make it stop!''
       While some of Lauren's cognitive skills were nearly on 
     target, she lagged in abstract thinking and interpersonal 
     skills. Her childhood was nearly friendless. The drugs Lauren 
     took made her by turns hyperactive, listless, irritable, 
     dazed, even physically aggressive. ``We hardly knew who she 
     was,'' Susan says. When she acted out in public, the family 
     felt the judgment of onlookers. ``Sometimes,'' Susan says, 
     ``I wished I could put a sign on her back that said: 
     `Epilepsy. Heavily Medicated'''
       At 17, Lauren underwent what her mother describes as ``a 
     horrific surgical procedure.'' Holes were drilled in her 
     skull, electrodes implanted, and seizures provoked in an 
     attempt to isolate their location in the brain. It was a 
     failure. ``We brought home a 17-year-old girl who had been 
     shaved and scalped, drilled, put on steroids, and given two 
     black eyes,'' Susan says quietly. ``We put her through hell 
     without result. I wept for 24 hours.''
       The failure of surgery proved another turning point for 
     Susan. ``Finally, I thought, `Well, I can cry forever, or I 
     can try to make a change.'''
       Susan began to meet other parents living through similar 
     hells. They agreed that no federal agency or private 
     foundation was acting with the sense of urgency they felt, 
     leaving 3 million American families to suffer in near-
     silence. In 1998, Susan and a few other mothers founded a 
     nonprofit organization to increase public awareness of the 
     realities of epilepsy and to raise money for research. They 
     named it after the one thing no one offered them: CURE--
     Citizens United for Research in Epilepsy.
       ``Epilepsy is not benign and far too often is not 
     treatable,'' Susan says. ``We wanted the public to be aware 
     of the death and destruction. We wanted the brightest minds 
     to engage with the search for a cure.''
       Then-First Lady Hillary Clinton signed on to help; so did 
     other politicians and celebrities. Later, veterans back from 
     Iraq with seizures caused by traumatic brain injuries 
     demanded answers, too. In its first decade, CURE raised $9 
     million, funded about 75 research projects, and inspired a 
     change in the scientific dialogue about epilepsy.
       ``CURE evolved from a small group of concerned parents into 
     a major force in our research and clinical communities,'' 
     says Dr. Frances E. Jensen, a professor of neurology at 
     Harvard Medical School. ``It becomes more and more evident 
     that it won't be just the doctors, researchers, and 
     scientists pushing the field forward. There's an active role 
     for parents and patients. They tell us when the drugs aren't 
     working.''
       The future holds promise for unlocking the mysteries of 
     what some experts now call Epilepsy Spectrum Disorder. 
     ``Basic neuroscience, electrophysiological studies, gene 
     studies, and new brain-imaging technologies are generating a 
     huge body of knowledge,'' Dr. Jensen says.
       Lauren Axelrod, now 27, is cute and petite, with short 
     black hair and her mother's pale eyes. She speaks slowly, 
     with evident impairment but a strong Chicago accent. ``Things 
     would be better for me if I wouldn't have seizures,'' she 
     says. ``They make me have problems with reading and math. 
     They make me hard with everything.''
       By 2000, the savagery and relentlessness of Lauren's 
     seizures seemed unstoppable. ``I thought we were about to 
     lose her,'' Susan says. ``Her doctor said, `I don't know what 
     else we can do.''' Then, through CURE, Susan learned of a new 
     anti-convulsant drug called Keppra and obtained a sample. 
     ``The first day we started her on the medication,'' Susan 
     says, ``her seizures subsided. It's been almost nine years, 
     and she hasn't had a seizure since. It won't work for 
     everyone, but it has been a magic bullet for Lauren. She is 
     blooming.''
       Susan and David see their daughter regaining some lost 
     ground: social intuition, emotional responses, humor. ``It's 
     like little areas of her brain are waking up,'' Susan says. 
     ``She never has a harsh word for anyone, though she did think 
     the Presidential campaign went on a little too long. The 
     Thanksgiving before last, she asked David, `When is this 
     running-for-President thing going to be finished?'''
       CURE is run by parents. Susan has worked for more than a 
     decade without pay, pushing back at the monster robbing 
     Lauren of a normal life. ``Nothing can match the anguish of 
     the mom of a chronically ill child,'' David says, ``but Susan 
     turned that anguish into action. She's devoted her life to 
     saving other kids and families from the pain Lauren and our 
     family have known. What she's done is amazing.''
       ``Complete seizure freedom without side effects is what we 
     want,'' Susan says. ``It's too late for us, so we've 
     committed ourselves to the hope that we can protect future 
     generations from having their lives defined and devastated by 
     this disorder.''

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