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."
LittleGiantFudge.com and Palmer Bus Service make this column possible.
Daniel J. Vance is a licensed professional counselor and national certified counselor from Vernon Center, Minn. His weekly newspaper column Disabilities has been published in more than 260 newspapers.
Daniel J. Vance may be reached at www.danieljvance.com
Pet Care | Real Estate | Restaurants | Tech | View All | * Add/Upgrade Business
Placer County News HeadlinesPCWA Customers Curb Water Use 34 PercentDrought Watch: Since June of this year, PCWA customers have decreased water use by 34 percent in comparison to base year 2013.
Roseville Area Events Calendar for October 3, 2015Roseville, CA - Bright sunshine and warm temps make for ideal conditions as the fall events season kicks into full swing in Roseville and beyond.
Placer County Child Support Services Recognized for ImprovementsThe Placer County Department of Child Support Services has received the 2015 Most Improved Child Support Program Award
Free Hazardous Waste Drop Off in AuburnPLACER COUNTY, Calif. - The Western Placer Waste Management Authority's annual household hazardous waste collection event will be held Saturday and Sunday
Repeat DUI's Targeted with Ignition Interlock ProgramOn Monday, Governor Jerry Brown signed into law SB 61, adding another 18 months to a four-county ignition interlock pilot program
California Fire Updates Summary (10-2-15)Nearly 1,000 firefighters are battling 7 large fires. In Northern California, an area of low pressure is moving throughout the area today with light showers
Lincoln Salmon Festival Celebration October 3rdLincoln, CA - The Wildlife Heritage Foundation (WHF) is gearing up for the sixth annual Salmon Celebration to bring awareness to the migrating salmon population
Roseville Coffee Wars: Dunkin Donuts and Dutch Bros. ExpandingRoseville, CA - Coffee is big business and Roseville is at center stage in South Placer County as the coffee giants battle it out to serve up their high-priced specialty brews.
151,000 Acres Scarred: Rough Fire GrowsCalifornia Fire Updates 2015: In Northern California, an area of low pressure is moving slowly into the area today with light showers expected and cooler temperatures
Seniors First Awarded Grant from Wells FargoSeniors First was recently awarded $10,000 grant from Wells Fargo Bank which will help to continue funding of Seniors First's eight Senior Cafes
Salmon Celebration Festival in Lincoln October 3rdLincoln, CA - The Wildlife Heritage Foundation (WHF) is gearing up for the sixth annual Salmon Celebration
Free Healthy Aging Program Presentations in OctoberIn a series of four Saturday morning sessions at UC Davis School of Medicine, attendees will learn the latest from physicians and other experts about aging and medical science.
NEWS: In Case You Missed It