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."
Print This Article
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
Placer County News HeadlinesHot Pink Fun Run in Downtown Roseville September 28thRegistration is now open for the 7th Annual Hot Pink Fun Run, a family-friendly run, walk and fun zone on Sunday, September 28, 2014.
Monty Python's Spamalot at Roseville TheaterSPAMALOT tells the legendary tale of King Arthur's quest to find the Holy Grail. However, diverting a bit from the true story, this hilarious musical
High Marks for Sierra College Energy Tech StudentsThe Sierra College Energy Technology students who took the North American Board of Certified Energy Practitioners Entry-level exam in June 2014, all passed.
Multiple Sclerosis Becomes Counselor's AssetDuring most of the '70s, Kathe Skinner, now a 65-year-old licensed marriage family therapist in Colorado Springs, Colorado, couldn't figure out what was wrong with her body.
Placer Water Agency Eyes $7 Billion Bond OpportunityFunding for water resource improvements in Placer County could be possible if California voters support the $7.12 billion bond issue on the Nov. 4 ballot, it was
Napa Earthquake Victims Urged to Hire Licensed ContractorsEarthquake: The Contractors State License Board (CSLB) is urging residents of Napa Valley and surrounding areas to only hire California-licensed contractors
8 Arrested in Roseville Police Drug and ID Theft OperationRoseville Police detectives, following up on a Roseville drug case, searched a home in Sacramento and found evidence of methamphetamine sales and identity theft involving scores of victims.
Placer County Republican Party Announces EndorsementsThe Placer County Republican Party has announced the following endorsements in local races for the November 2014 election.
Federal Subpoena Served to Placer County Sheriff's OfficeThe Placer County Sheriff's Office has received several inquiries about employee internal investigations and a federal subpoena.
Bill to Help Disabled Veterans Heads to GovernorA proposal sponsored by George Runner to protect California's disabled veterans cleared the Assembly this week with unanimous, bipartisan support, and now awaits action by Governor Jerry Brown.
Honda Offers Appealing New Accord Plug-in HybridHonda welcomed a new addition to its lineup for 2014: say hello to the Honda Accord Plug-in Hybrid. The new addition makes Honda one of the few automakers to offer
3 Arrested in Baby Formula HeistPlacer County sheriff's deputies arrested three Bay Area burglary suspects and are seeking a fourth after the group stole a large amount of baby formula from the north Auburn Bel Air store