Grandfather Appreciates Granddaughter with Rett Syndrome
A National Institutes of Health (NIH) website defines Rett syndrome as a neurodevelopmental disorder affecting girls almost exclusively. It's characterized, explains NIH, by "normal early growth and development followed by a slowing of development, loss of purposeful use of the hands, distinctive hand movements, slowed brain and head growth, problems walking, seizures, and intellectual ability."
Gregg Olson of Amboy, Minnesota, has a five-year-old granddaughter with Rett syndrome. In an interview, he said, "Evie can't walk or talk, but she can make sounds. She often has more frustration than most girls because she has to look at things to be able to tell you she wants them. She can roll on the floor, but can't really crawl anymore. And it will get worse."
His granddaughter's life expectancy will be like other American girls until her mid-20s, he said, but after that she has a greater risk of death. Olson has heard of women in their 40s with Rett syndrome. According to NIH, the disorder affects one live female birth in about 10,000.
"Evie is a wonderful little girl," he said. "She's taught me to take joy in the smallest things. An average five-year-old girl would be yelling and running around and carrying on, for example, but if Evie looks at me and giggles, I get a tremendous reward. She's also taught me to not look too far into the future. For instance, when she was first diagnosed, the doctors talked about her having seizures and the idea of my granddaughter having seizures just blew me away. But a (church prayer) group helped me through that. I now enjoy her for who she is right now. I enjoy whatever time I get to spend with her."
Olson also has begun looking at the bright side of situations normally not seen as bright. His granddaughter had a feeding tube installed, and although that wasn't Olson's ideal, Evie no longer has to experience the foul taste of her medicine. It goes directly into her stomach.
He offered this advice to parents: "First, don't try to understand why this has happened to you because you won't be able to understand. Just know that God doesn't make mistakes and you didn't do anything wrong. Also, we've gone through tremendous ups and downs over the last five years and sometimes the downs have been brutal. Pray for calm in the midst of the storm."
Daniel J. Vance is a licensed professional counselor and national certified counselor from Vernon Center, Minn.
Pet Care | Real Estate | Restaurants | Tech | View All | * Add/Upgrade Business
Placer County News HeadlinesAnnual Vic's To Gunther's Ice Cream WalkEveryone's invited to join in the Sacramento Walking Sticks annual Vic's to Gunther's Ice Cream Walk, including the family dog
Annual Fab 40's Run/Walk Benefitting Alzheimer's AssociationSacramento, Calif.,- On Saturday, July 29, East Lawn will host its 10th Annual Fab 40's 5k Run/Walk benefitting the Alzheimer's Association of Northern California
Men's Cross Country Team at WJU Signs ThreeROCKLIN, Calif. - The Warriors' head men's cross country coach, Parker Daniells announced the signing of three incoming freshmen to join in the 2017 season on the course.
Roseville to Host USA Softball Fastpitch ChampionshipRoseville, Calif., - USA Softball of Sacramento and Placer Valley Tourism are teaming up to host the USA Softball Girls Fastpitch 14U Class B Western National Championship
Placer County Sheriff Devon Bell to Run for ElectionRoseville, CA) - Placer County Sheriff Devon Bell recently announced he will run for sheriff in the 2018 election.
Upcoming Fundraiser in Roseville for Malnourished ChildrenROSEVILLE - A local effort to pack hundreds of thousands of meals for malnourished children around the world is holding its annual major fundraiser on Aug. 26
California Fire Updates (7.25.17)California Fire Updates 2017: 6,100+ firefighters battling 11 significant wildfires in California.
Roseville Gas Prices Feel the HeatRoseville road warriors are once again all smiles as gas prices continue to fall in and around Placer County
Kia Sorento delivers considerable versatilityRoseville, CA- Last year's remodeling effort took the Kia Sorento to a higher level and gave it more credibility among a somewhat crowded group of midsize sport utility vehicles.
Lake Tahoe's Most Stunning Beach is Sand Harbor State ParkIncline Village, NV - Destination: Sand Harbor State Park. Majestically set astride the California and Nevada borders, Lake Tahoe never fails to live up to its promise.
Off to the Races Food & Wine Tasting August 16thSACRAMENTO, CA - Celebrating 19 years, Race for the Arts' premiere event, Off to the Races Food & Wine Tasting, takes place on Saturday, August 16
Petaluma Music Festival set for August 5thPetaluma, California - This marks the tenth year for what has become one of the most highly regarded events on the West Coast summer music festival circuit
NEWS: In Case You Missed It