LOVELAND, Colo. (AP) - Cullen Filler used to describe his eyes as dirty to his mom, Becky Filler, in the months before surgery. It was the only way the 3-year-old could describe what his was seeing.
“One of the first things he said when he woke up was,” said Becky Filler about Cullen’s first surgery in April, “Mama, my eyes not dirty.”
Becky and Jason Filler first met Cullen when he was 9 months old when they decided to foster him. The Fillers eventually adopted both Cullen and his 8-year-old sister, adding them to their family’s four biological sons, reported the Loveland Reporter-Herald (https://bit.ly/29C20r2).
They knew right away Cullen had vision problems. He was eventually diagnosed with nystagmus that causes an involuntary and constant back-and-forth movement of his eyes, optic atrophy causing nerve damage in the central part of the retina, and cortical vision impairment (CVI) that causes a person to only be able see only through certain spots that change day to day.
They were scheduled to have the first surgery in April when they found out that, due to a clerical error, health insurance would not be helping and they would have to pay the entire cost. Word got out and the Loveland community, including friends, family, the congregation at Foundation Church, strangers and organizations like the Loveland Lions Club, came together to help out the Fillers.
“His vision has improved a lot,” Filler said. “Before surgery in his best eye with glasses, his vision was 20/200. After surgery, his vision was measuring at 20/125, which is a huge difference and it’s supposed to keep getting better for the next six months at least.”
For the first time he can do things like sit on the couch and watch TV; before he could only hear it. He can see stoplights and name the colors.
“He could tell right after that surgery that the moon was the moon and not street lights,” she said.
Filler said it has opened up other things like his vocabulary. He describes everything he sees in the best way he can. He has also had behavioral improvements.
“He would get really frustrated with his vision when he couldn’t see so he would bang his head all the time. The head banging has gone away, which is huge,” she said.
She said he no longer get scared when she steps out of the room to do laundry or household chores because he can find her.
“It’s gives us a huge sense of peace that we don’t always have to be 2 feet from him,” she said.
There are adjustments that Cullen has to make now that he can see the world. Becky said one of the more promising things is that he can see the horizon. However, at first it looked like water to him, and he would get scared that they were driving into it.
“Even though it was something that scared him, it proved how much he could see,” she said.
Cullen had to have a second surgery three weeks ago to realign his eyes. Filler explained that as his eyes healed from the original surgery, they started to pull outward. The surgery overcorrected the problem so that Cullen was cross-eyed, but over time the muscles will relax.
“That second surgery was really hard on him,” Filler said. It was a little longer than the first, and Cullen woke up in a lot of pain and had more issues with the anesthesia. There is a chance for additional surgeries, but as of now the healing from the second surgery is going well.
“With (the first) surgery being taken care of and the extra funding and then what the Lions Club did, it covered both surgeries,” Filler said. The family was able to raise over $30,000 before the first surgery. They were finally given a cash discount, and then they returned home to more donations and a gift from the Lions Club.
“When we got back home, all of our neighbors got together and re-did our front flower garden for us like a fairy garden. We had so many letters and cards waiting for us when we got home. The community was amazing,” Filler said.
Filler said if Cullen has to have any additional surgeries, the family feels like they can handle the cost. From the generosity, they have received, she said, they also feel like they can do more.
“It taught us how much more we wanted to give. We thought we were good givers before, but it really upped what we want to give,” she said.
The Fillers are now looking toward the future. Cullen is getting ready for preschool in the fall at Centennial Elementary, where he will continue his vision and occupational therapies through the school.
“The vision teacher who is going to be working with him at the school, she’s very well aware of the disabilities and certain things that might be super hard,” Filler said. They will also teach him how to use is walking cane to get around as a backup.
Before Cullen had his different therapies through Foothills Gateway all through the home, which was great, Filler said, but having them through the school now will make it a little easier on the family of eight’s full schedule.
The class he will be in will have six typical learning students and six non-typical learning students. He will get to be with kids who understand what it’s like to have a disability and with kids who don’t.
“He is so smart and in a lot of ways he’s above average. He’s known his ABCs before 2, and his colors, and that was when his world was shaking,” Filler said.
They haven’t done too much since his surgery so Filler is not sure what he would see if shown his letters. They made sure to have the second surgery in time so his eyes would be healed before school starts.
For the distant future, Filler is most excited that there is a chance Cullen will drive and ride a bike. To her, those will offer independence.
“Driving is the biggest thing for me, I think in my mind, because there was a huge chance he would never be able to drive,” she said. She said Cullen loves cars. Being able to see now, he can name off different types of cars as they drive past.
The last few months have been a roller coaster for the Filler family. From finding out the surgery wasn’t covered by insurance, to seeing the generosity of the community, to the guilt Becky said came from taking people’s money for a surgery with no guarantees, to finding out the surgeries were successful.
“It’s been so up and down and now that we are three weeks out of the second one and his eyes are looking good and his eyes are feeling much better,” Filler said, “it’s kind of like we can take a breath and look back and say it was good we did this.”
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Information from: Loveland Daily Reporter-Herald, https://www.reporterherald.com/
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