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Donation Helps Teen with Rare Form of Epilepsy
Glen Reiley, loan officer
Robyn Kloner, loan officer
Jenifer Merriam, Anissa’s mom
Jenifer Merriam's daughter Anissa is one of only 200 people in the world diagnosed with a genetic disease called Lafora – a severe form of progressive myoclonus epilepsy. The condition often begins with epileptic seizures and rapid cognitive deterioration. It usually appears in late childhood or adolescence and can include difficulty walking, muscle spasms and dementia. Lafora is fatal, and there is no cure or treatment at this time.
Because Anissa requires full-time care, Jenifer is unable to work outside the home. She is also unsure how long she has with her daughter, so friends raised money for a family trip. Bell’s Pay It Forward donation went toward the trip.
“The trip was so powerful for our family,” Jenifer comments. “Anissa was diagnosed last October, and since then we have been living on the rollercoaster of daily uncertainty known as Lafora, wondering if Anissa will have a seizure, if she will be able to feed herself or walk, or if will it be a good day for her. The trip allowed us to get away and breathe a bit. It gave us some normal in our anything-but-normal new life.”
During the family’s travels, Anissa still faced the daily challenges that come with Lafora, but she did better than expected, walked more than she had on her own in months, and was more present in daily conversations and activities.
“She smiled, she danced, and she showed more joy than I had seen in a long time,” Jenifer remarks. “I feel that getting her out of the house helped her in so many ways.”
The trip took them to Oregon, Las Vegas, Lake Tahoe, San Francisco and Cayucos.
“Bell’s Pay It Forward donation allowed me the opportunity to give Anissa experiences while she is still physically able to travel and cognitively able to enjoy all that we did,” Jenifer says. “This program does make a difference for families that are struggling with the most challenging of circumstances. Thank you, Bell for paying it forward to our family!”
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