Jason and Lacey Fellows of Weston have been through more than many in their journey of parenthood.
That their daughter, BrookLee, is even alive, they said, is a miracle.
Like most 7-year-olds, she enjoys going to first grade. She loves to help her dad with the horses on the family farm.
When BrookLee was five months old she began to have seizures. The number and severity of the seizures would stop BrookLee from breathing for 8 to 10 minutes at a time.
Doctors told the Fellows to take their daughter home and prepare for the worst, because she would have only six weeks to live. The couple turned to their faith, asking for elders of their church to giver her a blessing, and BrookLee lived beyond that six weeks.
But the seizures continued. By the time she was 4 years old, BrookLee was seizing close to 24 hours a day, seven days a week.
“When she would have a break in the seizures, BrookLee would recover and progress in her development,” Lacey said. “Then she would seize again and have to start all over with talking and walking. It was heartbreaking.”
“It was hard as a father,” Jason said. “You’re supposed to be able to be strong and take care of everything for your family. I couldn’t fix this. I felt gutted, empty. It made Lacey and I grow as a couple and as a family. We made so many new friends that were parts of tender mercies at the time, that’s for sure.”
In 2014, Jason and Lacey met with a medical team at Primary Children’s Hospital about a relatively new procedure to help BrookLee with her seizures. The surgery was called a hemispherectomy, in which neurosurgeons remove or disconnect part of the brain in an attempt to stop the continuous seizure activity.
“With every seizure, BrookLee deteriorated,” Lacey said.
“It was the only option to help her stay alive. The seizures had gotten progressively worse for the past four years.”
“We lived in fear every minute of every day,” Jason said.
On Dec. 4 of that year, Jason and Lacey handed their little girl over to the surgeons in a heartbreaking and terrifying choice.
“We didn’t know what to expect when she woke up,” Lacey said.
“My biggest worry was she wouldn’t remember me,” Jason said. “After the 13-hour surgery we walked back to her, her little eyes were swollen shut and she asked, ‘Where is my dad?’”
“When BrookLee did wake up her left side of her body was completely paralyzed,” Lacey said. “She had to go through a lot of pediatric rehab to relearn how to sit up and work her way up to walking. There isn’t any information about the statistics of the surgery’s outcome. Thankfully, she pulled through.”
The doctors had prepared the Fellows that their daughter wouldn’t be able to problem solve as part of her cognitive development after the surgery.
“BrookLee had the right lobe of her brain disconnected and a portion removed as well,” Lacey said. “She surprised all of us after her surgery when she looked at the doctor and asked him for a Coke.”
“He told her they didn’t have any on the pediatric floor,” Jason said. “She remembered they had a pop machine downstairs and told him to bring one back with ice and a straw. We knew she was going to be able to problem solve just fine.”
“Although she has to work twice as hard at everything she does,” Lacey said, “BrookLee has a good attitude. She has the sweet yet sassy determination to do it. “
With the help of a brace on her leg, BrookLee is able to walk independently. She is strong enough now to help her dad with the horses and hold the bucket of grain for them. BrookLee lost her peripheral vision and left hand function, but she hasn’t let that slow her down yet.
“Primary Children’s advised us to stay there to do the aggressive rehab,” Jason said. “It ended up not being good for any of us, staying at Primary’s, so we decided to move her to Logan Regional and do her rehab there. We would drive her down twice a day, but she was still able to be in her own home at night. We had a goal to get her to walk.”
Lacey said they worked their way down to one daily trip, then every other day, and now it’s once a week.
“Jason and I are proud of her,” Lacey said. “The best advice the doctors gave us: ‘Let her share her story.’ It’s been amazing to see her grow.”