Families Grapple With Rare Lennox-Gastaut

Rachel Ablondi and her husband David knew from the start their infant son Andrew was having trouble meeting common baby-milestones. But their giant wake-up call occurred during a party celebrating Andrew’s first birthday. All of a sudden, he went into a full seizure. Rachael and David raced to the emergency room.

Andrew was diagnosed with infantile spasms, and then Lennox-Gastaut Syndrome (LGS)–a severe form of epilepsy.

Doctors believe Andrew had a stroke either shortly before his birth, or during the birthing process. However, in 20 to 30 percent of Lennox-Gastaut cases diagnosed every year, no cause can be determined. Patients with LGS frequently have developmental delays, and other medical conditions to further compromise their health. In Andrew’s case, he also has cerebral palsy, vision problems, and autism.

Rachel and David are raising awareness about LGS because the majority of people have little understanding of the condition. For example, when Andrew had his teeth cleaned, and Rachael told the dentist about his seizure disorder, the dentist said, “They have treatments for that.” As if Rachael didn’t know! She finds situations such as that very frustrating.

LGS Foundation logo
Reach out and find support at the LGS Foundation. [Source: lgsfoundation.org]
Andrew is now 16 years old and attends a school for severely developmentally delayed students. To date, he has been treated with nearly a dozen different medications to control his seizures. Rachael feels fortunate to live in a major metropolitan area because they have access to excellent medical care.

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