Just keep swimming
Four-year-old Bree Parent has been tested for 14,000 different health disorders, and she doesn't have a single one of them.
For most parents, this would be fantastic news. But for Aaron and Ashley Parent of New Richmond, it's nothing but frustrating.
Despite Bree's struggle with many medical conditions, including gastroesophageal reflux disease, pharyngomalacia, microcephaly, hearing and vision loss, and obstructive sleep apnea, she still hasn't received an overall diagnosis. Her parents constantly research new disorders and syndromes, but because Bree's condition is seemingly unheard of, a cure remains elusive.
"She's a medical puzzler," Ashley said of her daughter. "The doctors believe it's genetic, but they don't know what it is yet. It's either extremely rare, or it's one of the first cases they've ever seen."
Although Bree showed no signs of disease in the womb, Aaron and Ashley began to notice her abnormally heavy breathing shortly after she was born. During a visit to Children's Hospital, doctors recognized physical features that pointed to underlying health issues. A neurologist identified Bree's microcephaly, or small head size, and an MRI revealed developmental delays.
Bree has functioned like a 1-year-old during most of her four years of life. She shows no signs of potty training, needs help eating and getting dressed, and goes through stages of insomnia that keep Aaron and Ashley awake for most of the night.
"It's unclear how fast or slow her development will come," Ashley said. "Her speech is at the level of a 5-month-old, but she finally learned to walk nine months ago. They're slow gains, but the gap always seems to be there."
In addition to being anemic and having poor growth, Bree suffers from obstructive sleep apnea that requires her to receive oxygen at night. Though her parents check on her regularly, they worry that the tube could become wrapped around her neck.
Despite Bree's many health issues, she has made small advances. Besides learning to walk, Bree wears hearing aids to correct her moderate to severe hearing loss, and her parents put a patch over her left eye for two hours a day with the hope of improving her right eye's strength.
Moreover, Bree's gastroesophageal reflux disease initially caused her to vomit for three hours after each meal, but her parents have since found an expensive medication that limits her vomiting to about once a week.
While many families could hardly imagine dealing with such extensive medical problems, the Parents have adopted a resilient and proactive attitude.
"It is really hard, but I love her and I want her to have the best life possible," Ashley said. "When I look at her, I know she didn't choose to have her life be so hard."
For Ashley, the hardest thing about Bree's condition is her inability to communicate. Although the Parents have exposed Bree to sign language and are experimenting with picture communication, they mostly interpret her needs through her voice's change in pitch.
"She'll say 'mama,' but it's not always meant for me," Ashley said. "Sometimes she just says it. I want her to be able to sign or talk, but she can't yet."
Because Bree is developmentally, physically and mentally behind her peers, it's hard for her to interact with other kids. Still, Ashley does her best to help her daughter live a normal life, taking her to the library's summer reading program and helping her play with other toddlers.
"Even though it's hard for her to do the things that other children can do, I still want to give her the experience that other kids would have," Ashley said. "If it's coloring, I just hold my hand over the top of hers and make her experience what other kids would."
Bree's parents credit her therapists and Sonshine Learning Center's early childhood education program with helping Bree progress. They are also grateful for Bree's discovery of an unexpected new freedom: swimming. While Bree struggles with movement on the ground, the water has provided her with a level of mobility she has never experienced before.
"Sometimes it's hard to know what Bree likes, because it's hard to get her to smile," Ashley said. "But the minute she's in the water, she shows signs of extreme excitement, smiling, kicking her legs and splashing."
Bree's parents said they would love to enroll her in swimming lessons as an alternate form of therapy, but her disabilities necessitate private lessons, and the cost is simply too great.
To help the Parents with their expenses, the Clayton Fire Department has selected Bree as the recipient of its annual benefit. Beginning at 11 a.m. on Saturday, Aug. 31, the benefit will feature tractors, trucks and semis. There will be a free will donation at the gate.
Attendees can enjoy food and beverages, door prizes and raffles, as well as participate in a large silent auction from 11 a.m. to 5 p.m. or a live auction at 6 p.m. There will also be activities for children throughout the day, including a fire smokehouse and a pedal tractor pull.
All proceeds will go to the Parent family to cover the cost of medicine, specialized safety equipment, communication devices and — hopefully — swimming lessons.
According to Ashley, the family copes by taking one day at a time. "This is just our normal," she said. "Bree didn't choose this life for herself, so we're going to try to make it as fulfilling as possible."
It's not always easy, but Aaron and Ashley do their best to keep their heads above the water. As for Bree? She just has to keep swimming.