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Bonney Lake godmothers grant Buckley girl’s wish
First there was a princess party for Regan Engelhardt and 70 of her friends and family at the Bonney Lake Mazatlan Restaurant May 3.
Then the Buckley 4-year-old and her family flew to Disneyland where she rubbed shoulders with The Magic Kingdom’s princesses.
Regan is prone to seizures but this time was shaking with excitement, all thanks to her Chicago cousins’ big hearts and the hard work of Make-A-Wish Foundation volunteers.
Diagnosed when she was 3 years old with Dravet Syndrome, Regan and her family have been living with her seizures since she was 6 months old.
Described as a catastrophic form of epilepsy, Dravet Syndrome was first described in 1978. It is a neurodevelopmental disorder beginning in infancy and characterized by intractable seizures.
“They’re really scary,” said Suzie Engelhardt, Regan’s mom. Regan registers eight types of seizures and some can last for more than 20 minutes. There was a time when the family was at the hospital three to four days a week. At one time, she was been know to have hundreds of smaller seizures a day, Englehardt said.
Dravet Syndrome is often genetic, but neither Suzie or her husband have the gene.
“Ninety-five percent of the time it just happens,” Englehardt said.
“This little girl has been through a lot in five years,” she said.
A ketogenic diet, which is a high-fat, adequate-protein, low-carbohydrate diet primarily used to treat epilepsy in children – along with medication – has helped. With the aide of a nurse, Regan now attends preschool.
“The first couple years she was like in a catatonic state,” Engelhardt said. “She’s just thriving now. She’s doing great, although we still have our rough days.”
The Engelhardts were excited about the Make-A-Wish opportunity. Suzie Engelhardt said the Bonney Lake wish grantors have been wonderful to work with and have included older brothers Brant and Lane in the fun too.
“Regan had an amazing time on her wish,” Englehardt said. “In fact, our whole family did. Make A Wish is just amazing. We had VIP treatment from the moment we walked out our front door until we stepped back in. Regan had a private meet and greet with Cinderella, breakfast with all of the princesses, she met Elmo who she loved, but most of all she loved the rides. She had a smile on her face the whole week and it was such a wonderful time for our family. She even had very few seizures while we there. It was awesome.”
The exposure also provides an opportunity to inform the community about Dravet Syndrome, a role the Engelhardts take seriously as members of the International Dravet Syndrome Epilepsy Action League, a group of parents and professionals working toward greater awareness and understanding.
It also gives the family a chance to celebrate Regan.
“She’s just taught us so much,” Engelhardt said. “She’s such an awesome, strong girl.”