Sara Estrella, 25, of Hodge Street in Wiscasset lost her speech at 5. And father Ernie Estrella believes if it weren’t for the medically prescribed marijuana she has taken the last few years, she would still have multiple seizures a day and not the strings of seizure-free ones like Saturday, when her family was part of the crowd at Wiscasset Parks and Recreation’s ScarecrowFest.
She was there for the making of a scarecrow from clothes of hers – Old Navy and other brand name ones she likes to wear, her father said. The scarecrow was also wearing a purple wristband with hearts and two messages: “Prayers for Sara” and “LGS Angel.”
Sara has Lennox Gastaut Syndrome. In followup interviews Sunday, her father and mother, Shawnea Estrella, said it has given their daughter seizures since she was 6 months old. Its cause is unclear, Ernie said. Among early, failed efforts to stop the seizures was brain surgery at 5. She never spoke a word after that, Shawnea, assistant manager at Edgecomb Green, said.
“I haven’t heard ‘Mama’ since she was 5 years old.”
That is hard, she said. So is knowing Sara won’t go to college or have children as her two older sisters did. The family takes care of her and lives with the knowledge LGS can shorten a life. Shawnea said every day is a gift, to use to the fullest, taking Sara out into the fresh air to walk downtown and along the waterfront of the town they moved to two years ago from northern New Jersey, and take part in community events.
Sara is a tremendous walker, Ernie said. But for events like Saturday’s, with people all around, the family uses a stroller, in case she has a seizure. He said she probably didn’t grasp the concept of making a scarecrow, but he thought she enjoyed the event – including the Sarah’s Cafe’s haddock chowder.
“She wolfed down a bowl.”
Besides walks, Sara likes playing with books and playing on her blue, two-decades-old, dinosaur-shaped, plastic piano. The family is looking for an identical one in case it breaks. Sara enjoys listening to all music – except John Denver’s.
Sara doesn’t sign. The family has learned to read the cues for what she’s feeling. Her parents said she speaks with her eyes. She looks into yours, and can look deep into them, her father said. And Sara smiles, he said.
She was smiling on the municipal building lawn midday Saturday when she and her father posed for a photo with the scarecrow, mounted facing Route 1 like the others.
As for the wristband, Ernie said the family had about 1,000 made a few years ago to help make people aware of Sara and LGS. He is working on a plan to distribute the many that remain.
Shawnea said Sara has taught her many things, including unconditional love; and she said by being out in the community often, such as at ScarecrowFest, summer concerts on the town common, visits to Popham Beach and Reid State Park, and the Halloween night “Nightmare on Federal Street” block party again this year, Sara is educating others about LGS and the fact not everyone of us is the same.
Shawnea has Halloween night off and plans to go as a crow, joining Sara, who will have hay in her stroller and go as a scarecrow.