Light Houston purple for Epilepsy
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80 ORVILLE DR SUITE 100 | BOHEMIA, NY 11716 WWW.LGSFOUNDATION.ORG | 718-374-3800 | TAX ID: 26-2051377
To the mayor of Houston,
Sylvester Turner c/o City Secretary
I am writing on behalf of the LGS Foundation, the leading organization in the world dedicated to raising awareness and research funds for Lennox-Gastaut Syndrome, a rare and severe form of epilepsy. Please accept this letter as a formal request to illuminate the City Hall in the colors of green and/or purple on November 1st in conjunction with International Lennox-Gastaut Syndrome Awareness Day, which also kicks off the first day to epilepsy awareness month in the United States. Purple is the color of epilepsy awareness and green is the awareness color for LGS.
As you may know, epilepsy affects nearly 50 million individuals worldwide. Lennox-Gastaut Syndrome is one of the most severe and debilitating forms of epilepsy that first appears in childhood and persists into adulthood. Individuals living with LGS often suffer from frequent and multiple seizure types daily, cognitive impairment, regression, and an increased chance of SUDEP (sudden unexpected death in epilepsy).
We look forward to your response and thank you again for your consideration this year.
Please let me know if you have any questions.
(Mother of a Epilepsy warrior)
___ Jazlyn's Journey ___
It is rare that someone has heard of Lennox Gastaut Syndrome but the fact that I have met over 100 families and children who suffer from our same battle is what strives me more to push for our awareness. Our syndrome…if I can pause for a few seconds …1..2..3..4..5, by the time I count to six, either my daughter or another warrior has battled a seizure and now allowing their brain regroup back to its regular state or others may have settled by a direct injection to mucous membrane.
Through every seizure our fears grow so much that our child not only has regressed her memory skills but also the devastation that sooner or later they will become stronger and suddenly the chance of SUDEP become a risk. At Jazlyn’s age, why should I worry about this? It is the same anxiety and frantic questioning as when she was introduced to our world at 2 months old and was already experiencing such neurological and physical tolls.
Yet doctors first misdiagnosed her tremors as colic or infantile spasms then after turning one year old with no controlled success, it became a “seizure disorder”. Jazlyn was a “interesting aspect to neurology” since they could not pinpoint the cause and only had evidence in her EEG. The “interesting” part was that her brain activity was so abnormal yet some seizures were not visual and others occuring even in her sleep. She was slowly and still is delaying in growth.
It took us many restless nights, researching day after day, trying to reach out to other families who matched our same kind of medical issues. Jazlyn at 3 years old was evaluated at 6 month old level; our situation was turning into desperation. This was not just a “seizure disorder”, it had to be something more
Our sweet Jazlyn Eva, or Jazzy, who is now 8 years old is now known as a LGS warrior, thanks to the right neurologist and to the our LGS foundation team and social group we were finally able to realize Jazlyn’s condition. Though the stressful years it took, we would hate for other LGS patients to feel alone and for this we push the goal for our community to be aware of our daily battles of we call LENNOX GASTAUT SYNDROME.
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