Jay Richard Hegstad was a brave warrior. He passed away at age 16 on July 27, 2022 after a lengthy battle.
Jay had the brightest eyes and personality that lit up every room he was in.
As one of his favorite book series, How To Train Your Dragon, put it, he had been through many "trials and tribulations" and had overcome them with grace.
His Great Grandmother, Goldie Hegstad, always told him, "you are a Viking, and Vikings are never defeated". Jay's Native American heritage was also important to him.
Jay was born with a rare genetic disorder, Mecp2 Duplication Syndrome. Jay was one of the handful of individuals with a Mecp2 Partial Triplication to grace this Earth. He was the longest living known by the Mecp2 speciality clinic, the Bluebird Circle Rett Center, at Texas Children's Hospital. His longevity is a testament to his warrior spirit.
From an early age Jay overcame many obstacles, learning to walk, verbalize, sign, and even walking after he broke his leg.
Jay was a medical pioneer in so many ways, participating in studies at the Bluebird Circle Rett Center, other Mecp2 studies around the world and pioneering new medical treatments for Mecp2 Duplication Syndrome. He routinely exceeded everyone's expectations.
Jay loved the outdoors, being near and in the water, especially Cannon Beach, Vista Park and Lake Sacajawea. He enjoyed planting rare sunflowers and pollinator flowers,and baking with Mom. Jay was a voracious reader, enjoyed the arts, including painting, drawing and pottery, and doing science experiments. Jay loved music, especially blues and gospel, and enjoyed his laser lights that always graced his ceiling and walls.
Jay raised butterflies annually and had raised praying mantises. He fed the many squirrels and birds in his yard.
He had a special connection to animals and they responded to him with love.
Jay lived his life with purpose and never complained. He was full of joy, life and love.
While he could no longer speak, he spoke volumes with his eyes and eyebrows.
He is survived by his Mother, Mindy Hegstad in Longview, his adopted Father, Jason Enneberg in Montana, his honorary father figure and caregiver, Steve Lane, and his two cats who loved him very much, Juno and Clementine.
Thank you so much to his caregivers who allowed him to stay home in his final months, Zoe Davidson, Heather Cosmo, Lexie Johnson and Marilyn Fisher.
We are grateful to Longview Fire, AMR, Cowlitz 2, and St John Medical Center for all of the compassion and care provided during Jay's life.
Please help us find a cure for Mecp2 Duplication Syndrome. Researchers are working on a cure, please consider a donation in Jay's honor through www.401project.com.
Please join us in a Celebration of Jay's life at the Steele Chapel at Longview Memorial Park on Wednesday, August 10th at 1pm.
Jay would want people to share in the joy that was his life and wear Hawaiian shirts and vibrant colors.