AVIS-To Brooke and Shane Winkleman, their twin daughters Kera and Kali are pretty much like any other kids. They laugh, they cry, they love.
They just don't talk.
They have Cri du Chat Syndrome, causing some developmental delays for Kera and Kali.
Brooke and Shane Winkleman sit with their twin girls, Kera and Kali, in their home in Avis. Kera and Kali have Cri du Chat Syndrome, causing some developmental delays.
Though they do have some motor skills, at 3 years old, they still don't speak.
"Daily life is crazy," Brooke said with a short laugh. She's home with the twins every day. Her husband, Shane, works at Bell Supply in Avis. "Kera's way more active than Kali. She gets into everything."
"It can be frustrating. We don't know what they want (since they don't talk), so it's trial and error to see what they need," Shane said. "If they don't eat, it must be something else. We check their diapers - it must be something else.
"But that's really the only difference between them and a typical kid," he added.
Cri du Chat (French for "cry of the cat"), also called 5p- Syndrome, affects one in every 50,000 newborns, according to a 5p- Society press release from May 9.
The Winkleman's girls were the first twins in North America to both have the syndrome, Brooke said.
Some newborns with the syndrome also have heart and kidney defects, Brooke said; they count themselves lucky their girls didn't have more serious symptoms.
When they were born, Kera had a cleft pallet, but not a cleft lip, which was a red flag to the doctors; normally, both occur together. Their cries also sounded like kittens crying, a classic sign.
Kera was 7 months old when she was genetically tested for the syndrome, and Kali was 10 months when she was found to have the same syndrome.
Now, at 3 and a half years old, they're small but healthy. Kera's cleft pallet was surgically fixed, and other than the twins both suffering from occasional acid reflux (also from the syndrome), Brooke and Shane are thankful to have these two beautiful, healthy little girls.
Up-to-date information and education has helped them tremendously.
The 5p- Society (five p minus) is the support group for the caretakers of those with the syndrome, and offers support groups and education.
They offer educational conferences, and the Winklemans went to last year's in Ohio.
One of the biggest take-away lessons for them is that the developmental level is different with each child with the syndrome.
They were also given a chart that breaks down the effect of each deleted gene, such as speech, cry, and other forms of development.
According to the press release, "Cri du Chat...is a rare genetic disorder caused by a deletion in the 'P' region of the fifth chromosome."
Though the twins' gene deletion is exactly the same, they have different levels of development, Brooke said.
Kera has gross motor skills and can walk and crawl. Kali has more of the fine motor skills; she can grasp objects with two fingers. Kali can do some signs, like for bubbles.
"Kali used to say some words, but I don't think she cares to, anymore; we don't know why," Brooke said.
They want to get an app for their iPad that lists names of food with the corresponding picture so the girls can choose what they want to eat.
Preschool also helps the girls develop, and they love their classmates, she added.
Their aide, Staci Knorr, stays with them and said they love going to preschool three days a week at Avis Elementary School through BLaST.
They started three months ago, and can identify their own pictures. Every day, they are shown pictures of themselves (and twin), and they point to the right one each time, Knorr said.
While Kali is content to sit, Knorr said, Kera is the more rambunctious one, always getting into something, whether at home or school.
But it's the network of support the conferences offer that Brooke relies on to help her get through the day.
"We keep in contact with the families at the conference. There were 100 families at last year's conference. Staying in contact with people helps. We had a rough time with Kera, but I talked with one woman from Canada who had similar experiences" who gave her tips on how to handle it, she said.
The conference this year is at Denver, Col., and they're looking forward to the behavioral session. "We heard it is possible for a child with this disorder to talk," Brooke said. The girls travel with them and are supervised by a professional acquainted with Cri du Chat.
Some of the best moments are when the girls accomplish something new.
"Kera's just starting to hold someone's hand and take her first steps," she explained.
The day she took her first step was a monumental moment for them, since she didn't begin to walk until age 3.
One of the struggles, however, is sometimes feeling alone.
"Most parents don't understand if they don't have kids like them because they're not going through it," Brooke said.
"If I go into work and tell them Kera crawled today, they might shrug and ask, 'So what?'" Shane intoned. "Their kids crawled within their first year, but ours didn't until three years."
That's where the support network comes in to stand in the gaps.
When Brooke posts the girls' progress on Facebook, she gets a huge response from parents of those with the syndrome.
"When I post on Facebook my girls' progress, the biggest responders are people with kids with 5p- Syndrome because they know what it's like," she said. "When I wrote my story on Facebook, I saw all the people who responded. And I knew we weren't the only ones."
Brooke and Shane also offer each other tremendous support.
"Statistically, we should not be together right now," she said. They've been together since 2007, and had the girls in 2008.
"A lot of my friends with kids with this disorder are now single parents" due to the stress on the marriage, she said.
How do they make it?
"I don't know!" exclaimed Brooke initially. "We just do."
They still have arguments, many about the girls, but when they cool off, they come together and once again, make it work, she said.
They try to have date nights and also nights to spend some "me time."
Despite the struggles, these girls light up a room with their smiles. Knorr loves spending time with them.
"The most rewarding part is their smile. I have three kids at home, and I don't feel like I'm at work here. They just smile and go with the flow," Knorr said.
Indeed, Brooke wants everyone to know they're wonderful kids - and just like any other kid.
"They're not sick. You can't catch nothin' from them. Sometimes, people look at them and stare because they're different. Just because they're different doesn't mean they're going to catch something from them.
"I don't see anything different about my girls, but people at Wal-Mart look at us funny, like, can you stop your kid from squealing? But it's not contagious," Brooke emphasized.