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."
Sponsored by Blue Valley Sod.
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 HeadlinesPlacer County Hoteliers: Taxman Cometh Airbnb, Vacation Rentals By Owner, inns or hotels. If you provide lodging in Placer County, you're required to collect Transient Occupancy Tax
Lake Tahoe Bound? Be prepared and patientTAHOE CITY, Calif. -- As Northern California prepares for the second and third storms of a week-long string of weather systems, Placer County is reminding residents and visitors
New California Laws 2017 (Part 15)Roseville, CA - New California laws for 2017. Part 15 includes criminal gangs, property taxes, real estate licenses, terrorist activity, child abuse, voting: felons, human trafficking
Study: Lung Cancer Patients Not Receiving TreatmentA national study by researchers at UC Davis Comprehensive Cancer Center has found that a significant number of lung cancer patients are not receiving treatment.
$21 Million for Regional Small BusinessesThe Capital Region Small Business Development Center (SBDC) has surpassed significant milestones in helping regional businesses
Rocklin Preschoolers Donate to Children in NeedROCKLIN, CA, - Students at Merryhill Preschool in Rocklin collected 69 pairs of pajamas to benefit local children in need for the holidays.
Bust Water Use Myths in Water Spots Video ContestLocal area middle and high school students can win cash prizes and the opportunity to view their video on the Raley Field Jumbotron
Placer SPCA seeks 2017 Hero Awards NominationsRoseville, CA - Placer SPCA is seeking nominations for the 2017 Hero Awards, to be presented at the 16th annual Funny Bones Comedy & Awards Night
Beatles vs. Stones Tribute at Harlows this MarchThe debate between the Beatles and the Rolling Stones has been going on ever since they first crossed paths on the charts 53 years ago
Man Still Recovering from TBITwo years back, I featured Daniel Mignerey who somehow survived life-threatening injuries on February 6, 2015
Rocklin Library hosts Lend A Heart Therapy DogsRocklin, CA- The Doggone Good Reading Group meets the second Tuesday of every month from 3:30 to 4:30 at the Rocklin Library
Placer Vineyards granted Regional General PermitJust west of Roseville, Placer Vineyards was granted its Regional General Permit
NEWS: In Case You Missed It