Community comes together following Facebook post
In all of the strife of COVID-19, in all of the nausea of the elections, there remains a goodness among most of us.
Kelley Sperry’s world is often topsy-turvy as she fights Parry Romberg Syndrome, but she and her family have found a welcoming respite at the Lake of the Ozarks when they visit from their home in Windsor, Colo. The open arms of strangers at the Lake has softened the challenges they all face. Those strangers are now counted among their friends.
As a child, Kelley was diagnosed with Parry-Romberg Syndrome which causes the soft tissue, skin and muscles on the right side of her face to degenerate, or waste away.
“It sucks,” she’s said more than once. “But I have accepted it.”
Since 2008, her disease has caused brain lesions from brain atrophy, leading to seizures. As the years have gone by, the seizes have steadily worsened.
Helping her cope and giving her sometimes-challenging days a lift is escaping to the Lake once or twice a year. It’s the out-pouring of love and support she and her family have received here that helps buoy her spirits.
Donna has been vacationing at LOTO since the late 1960s with her family and often stayed at Relax Away Bay Resort in Sunrise Beach. There used to be cabin rentals there, but those have been converted to individually owned condos with a community dock and pool.
“I was curious about Relax Away Bay a few years back and Googled it. I was bummed to learn that our little ‘resort’ had turned into condos. Hoping to get back to that exact area of Sunrise Beach, I contacted some of the owners of the condos (some were renting) to see if we could book something.”
Turns out, one of the owners of one of the condos lives 15 minutes from the Sperry’s in Windsor.
“Nothing much has changed and we love that!” Donna says. “In the 60s and 70s, these cabins were all pink!”
When she and Jay had children they continued to vacation at LOTO, meeting up with other family members including cousins, grandparents, etc.
“We even had a huge family reunion at Relax Away Bay for my parent's 50th anniversary. We have great memories. Now, our adult children want to continue vacationing there. We hope to find a place of our own someday.”
Kelley has significant physical challenges but – again – the Lake of the Ozarks community has responded.
•Cindy and Barry Compton, who own one of the units at Relax Away Bay and live near the Sperrys in Colorado, offered their cabin at no cost. “We've since had them to our home and they are wonderful people, with the same types of memories our family has,” Donna says.
•Lake resident Kim Capps responded to a Buy Sell Trade post Donna put up asking for a place to rent or borrow a few pieces of medical equipment that were needed for Kelley to be safe. The Sperrys didn't have room in their vehicle, so Capps and her daughter dropped off the equipment the same day they arrived. She is now Donna’s Facebook friend. “I know she had to drive quite a ways to get those to us. “She didn't charge us a dime,” Donna said in amazement.
•Jason and Amy Weller of California (state of) responded to a Facebook post asking for a captain of a go-fast boat to surprise Kelley for her 29th birthday. They “went over and above” and took Kelley, Jan and Donna for two fast boat rides, and drove them by boat past their condo at Regatta Bay where they had people sing happy birthday to her from their porches. They surprised the Sperrys with a special dinner at Baxter's several days later and also invited the family to stay in their condo while the Sperry’s "escaped" their home in Colorado after putting it on the market. “We got together for dinners and, yes, another boat ride. Kelley has that need for speed. We talk all the time on FB and hope they will be lifelong friends,” Donna said.
•Jimmy Ruma of St. Louis sustained terrible injuries a few years ago but offered to bring his wheelchair for Kelley to use after reading a Facebook post. “We ended up not needing it and he, too, is now a Facebook friend. We hope to meet him at the Lake someday soon,” says Donna.
All about family
Kelley has two brothers, Jesse and Dillon. Jesse has been able to take part in the family activities at the Lake, but Dillon has challenges of his own.
He has been diagnosed with Non-Hodgkin’s Lymphoma. “It was heartbreaking that he couldn't come with us,” Donna said.
And then there’s Kobi, a service dog trained by Domesti-Pups in Lincoln, Neb.
“It was a horrific year,” Donna recalled. “Kobi was her best friend on so many levels. He died unexpectedly one night after being fine and going on a walk the previous day. To tell Kelley that Kobi was gone was one of the hardest things we've had to do. She is still very much grieving even now, a year later. Besides helping Kelley with many tasks, he literally saved her life on many occasions when he alerted us that she was in a seizure and unable to breathe after turning into her pillow/mattress.”
A grant from the Chelsea Hutchinson Foundation helped the Sperrys pay for Kobi.
"When I start to have a seizure, Kobi would bark just once to alert the nurses,” Kelley explained in a news story in the Fort Collins Coloradoan before he died. “The nurses trust him and know that nine times out of 10 when Kobi barks, I'm really having a seizure. At home, he will often brace himself to catch me or ease me down as I fall. He also pushes a doorbell with his nose to alert my parents."
About the disease
Parry–Romberg syndrome or progressive hemifacial atrophy is a rare, uncommon, degenerative, poorly understood condition characterized by a slow and progressive atrophy affecting one side of the face. It typically is more common in girls. The incidence and the causes of this alteration are unknown, according to the U.S. National Library of Medicine.
Jay and Donna note that November is National Epilepsy Month, and encourage people to not only research their daughter’s disease but also remember those who are afflicted by epilepsy.