When identical twins Aria and Olivia were around 6 months old, their mother, Jenny Becker, began noticing a difference between the development of each twin. Aria struggled to keep up with Olivia, and she had trouble holding her head up and using her trunk. Initially, doctors suggested Aria was simply the weaker twin, but Becker knew something wasn’t right. At 8 months old, Aria was diagnosed with cerebral palsy. Her doctors now anticipate she’ll be dancing at her senior prom; however she will need the help of her friends, family, and community to get there.
Photo by Jen Burris
Olivia, left, and Isaiah pose next to their sister Aria, right, after a morning of playing together.
A benefit for 4-year-old Aria Bell, daughter of Leon Bell and Jenny Becker, will be held Sunday, July 28, at the Black Horse Bar and Grill from 1 to 6 p.m. There will be several musicians playing live music, plus a DJ, food, Vikings cheerleaders, and a silent auction.
“There’s an intensive therapy program in Michigan for physical therapy that insurance does not cover,” Becker explained. “It’s just an amazing program, but it’s very expensive.” The program is in Pontiac Mich., at Euro-Peds National Center for Intensive Pediatric Physical Therapy. The program is four to five hours of straight physical therapy for two to four weeks at a time.
Aria’s family hopes to raise enough money not only to cover costs for Aria to attend the program for two weeks, but to give another child the chance to take advantage of the program, as well. “Any money that exceeds what we need to pay for her therapy will be put into a fund in her name at the facility she goes to,” Becker noted with a smile. “The facility will then select a child who maybe doesn’t have the financial means, or the support from their community, friends, and family, and give [the child] that money to be able to help them go through the program.”
Aria was diagnosed with cerebral palsy at about eight months old, after Becker decided to take Aria for a checkup in Winona “They said a lot of times in twins, especially identical twins, one is more dominant than the other, and that she would eventually catch up,” Becker said. “But a couple months passed and I still felt something was different, especially having Livi to compare to; so I asked for a referral to Gundersen, and that’s when they did the MRI and CT scan and saw what had happened.”
According to Gillette Children’s Hospital in Minnetonka, Minn., where Aria receives weekly therapy treatments, cerebral palsy is a disorder “caused by abnormal brain development or damage to the brain that occurs around the time of birth or early in life. Cerebral palsy causes problems with muscle tone, movement, balance, and/or coordination.”
Becker says a common misconception regarding cerebral palsy is that it is a cognitive disorder. “It’s not. I mean, children with cerebral palsy can have delay, but that’s not because of the cerebral palsy,” Becker explained. “People will kind of talk down to her, like she doesn’t understand. It drives me crazy, because she understands, she just can’t respond. Because of the muscles, she doesn’t know how.”
Aria’s therapy each week consists of occupational speech therapy and physical therapy as well. Aria has recently learned how to say “hi,” and has received a speech communication device to help her as she learns to talk. She is making progress physically as well.
“Her therapists are amazing, telling us what to do at home; because we’re there only one day a week, we’re responsible for her progress six other days a week,” Becker noted. Becker has videos of Aria when she was younger and couldn’t even lift her legs. Now she can push her gait trainer all by herself. “I think we still have a long road, but I think that just being able to see that little bit of progress gives you hope,” Becker said brightly.
“We have to play music to get her through her therapy, so we’ll be in the doctor’s offices listening to Beyoncé and Nicki Minaj, anything with a beat. It’s definitely not nursery rhymes,” Becker said with a laugh.
Aside from issues with her muscle tone, Aria began suffering from seizures at the age of two and a half. “That is even harder than the cerebral palsy, dealing with the seizures,” Becker noted.
“We started Aria on the ketogenic diet. It’s a nearly all-fat diet, and it’s supposed to have a 90 percent success rate in eliminating seizures,” Becker explained. Aria’s seizure medication makes her extremely tired, however. “Zombie-ish, and that’s our biggest thing, trying to get her off of that, because quality of life is most important.” So far the diet hasn’t reduced the seizures, but Aria’s family isn’t giving up yet. “If that doesn’t work, we just keep moving forward. It’s hard to see her just kind of like, blah [from the medications], but it’s harder to watch her have a seizure,” Becker added.
While Becker admitted that raising a child with health problems can be challenging, she was quick to note how much her family has learned and benefited from the situation. Aria and her twin sister Olivia have an older brother, Isaiah. Isaiah and Olivia "are so patient for their age, they just amaze me,” Becker said proudly. “I’ve never, personally, heard them complain that we’ve had to show more attention to Aria, and not even attention, just time. They come with us to doctor’s appointments, and they’ve seen kids with all different kinds of disabilities, and I think for them that’s amazing, because they have such a better understanding and appreciation for kids,” Becker said gratefully. “Even at 7 years old, just the things that Isaiah says and does and how he is towards her; it’s just amazing to me — you don’t see a lot of 7-year-olds who are like that, or even Olivia, at age 4. We were talking about what everyone wanted to do when they grow up, and Olivia said, ‘I’m going to take care of Aria.'”
Aria’s cerebral palsy is an “ongoing thing; it’s going to be something that’s with her the rest of her life,” Becker noted. “The doctor said that she’s writing the book and we’re reading it, so we can ask all the questions we want as far as, is she going to walk? Is she going to talk? But nobody knows. All we can do is give her every opportunity that we can through therapy and technology — like with her speech communication device — to be able to allow her to learn how to do those things,” Becker explained. “Anytime she shows a bit of interest in walking or talking, we just kind of move on that, we just follow her lead.”
Although Aria will continue to deal with cerebral palsy for the rest of her life, Becker noted that it can only improve. “It’s not like MS (multiple sclerosis) where it progressively gets worse, so a positive with CP is that you can only really get better.”