By Linda Scherer
Faith Dressel, 4, is unable to speak, but through her parents, Gary and Allyson Dressel of Winsted, her voice can be heard.
Her parents are dedicated to Faith’s cause not only providing for her daily needs, but in doing whatever it takes to help her reach her full potential.
Faith was born with Moebius Syndrome, a rare disorder which causes facial paralysis, and low muscle tone which can delay crawling and/or walking. She has also been diagnosed with Pierre Robin Sequence, characterized by a recessed jaw.
Because Faith’s jaw is not forward enough, it has caused her airway to be partially blocked. To help her breathe, a tracheotomy is necessary. She has a gastrostomy tube (G tube) which is surgically inserted into her stomach through the abdomen and she is fed through it 20 hours a day.
As a means to help the Dressels provide for Faith, they were pleased to learn Faith was chosen as one of four recipients to receive assistance from the Tim Orth Memorial Foundation.
The foundation assists, financially or otherwise, children in the west central Minnesota area who are facing substantial medical expenses incurred as a result of a serious accident or illness.
The foundation is sponsoring its 10th annual Tim Orth basketball jamboree Friday, April 4 at Glencoe-Silver Lake High School, with all proceeds from the jamboree going to Faith and the other recipients.
Some items that the Dressels know Faith will need in the very near future are a bed, because she has nearly outgrown her crib, and a lift which is standard equipment for a patient once she reaches 50 pounds and requires help being moved from one place to another.
The Dressels would also like to see Faith get a crawler. A crawler has wheels on it and supports the middle of the body, and would be a real help in teaching her to crawl.
“We tried to be creative and make one by ourselves, but it was kind of crude,” Gary said.
It’s the physical therapy, occupational therapy, and other activities that Gary and Allyson are hoping will continue to help Faith make progress.
“The difficult part for us has been that it is a whole new experience in trying to be an advocate for her,” Gary said. “Trying to decide what we should be asking for her.”
Since Faith was born, the Dressels have learned more about medical terms, procedures, and doctor specialists than most people would ever learn about in a lifetime.
There are approximately 10 doctors that Faith must see at least twice a year.
“She has a cranial and facial doctor for her jaw, an ear, nose, and throat doctor about the trach; a pulmonologist for her breathing airway, and an audiologist for her hearing aids because she has severe loss in one ear and moderate loss in the other,” Allyson said.
“She has to see an opthomologist about every four months because the facial paralysis does not allow her to blink as often as she should, and she cannot move her eyes from side to side like we can. That is part of the Moebius side effect from the facial paralysis, and there is a significantly higher chance she could develop some kind of an eye problem,” Allyson said.
Faith requires 24-hour nursing care.
At first, it was not easy for the family to get used to having a nurse in their home all of the time, but now, they are very glad to have the extra help for Faith.
“The nurses are now part of the family,” Gary said.
“We have some wonderful nurses, Allyson said, “who are very good to Faith.”
Even thought Faith qualifies for 24-hour nursing care through a county agency, that does not mean the Dressels are always able to get nursing care. It depends on the agency having enough nurses to meet their needs.
Allyson, who has a degree in teaching Spanish, is now studying to be a nurse.
She works part-time at the assisted living Linden Wood Apartments in Winsted three nights a week. Two nights a week, she attends technical community college in Granite Falls. She is hoping to become a licensed practical nurse by June. Then, she will continue one more year to become a registered nurse.
Before Faith ever left the hospital, it was necessary for her parents to learn how to take care of Faith on their own, including changing her trach and her G tube.
“When we were first trained in putting a tube into someone and knowing that is where they breathe, that was scary,” Gary said, “but for us now, it has become second nature.”
Faith’s siblings, Emily, 6, and Nathan, 3, have learned they need to take extra care with her.
“They know that it is different with her. A lot of times, they are hugging each other until they fall on the floor and then they are rolling around. They know they can’t do that with Faith,” Allyson said. “They are very gentle with her.”
More than willing to do anything to help make Faith’s life better, the entire family has taken steps to learn sign language.
“We were thinking long-term. If the trach stays in, she might not be able to speak, and with her hearing problem we purchased some DVDs that teach sign language,” Gary said.
“Before Nathan started talking, I bet he knew 100 signs. He is really good with it,” Allyson said.
Gary and Allyson try to keep family life as normal as possible, not only for Faith, but for their other two children.
Emily attends kindergarten at Howard Lake-Waverly-Winsted and Faith attends preschool there, as well.
“It is good for Faith to have the stimulation of other kids, and I think it is good for the other kids, too,” Allyson said.
But having Faith in preschool was not an easy adjustment for Allyson to make.
“One of the hardest things for me has been Faith going to school this year,” Allyson said. “She can’t tell me if she has had a bad day. She can’t tell me if the kids were teasing her.”
Because Faith is not able to talk, the whole family has learned to understand her needs by looking closely at her eyes or body language.
“It is something you pick up on,” Gary said.
They have discovered that Faith enjoys music and especially, the Veggie Tales cartoon with Larry the Cucumber and Bob the Tomato.
“She really likes the music. They are silly songs, total nonsense, but fun music and fun characters,” Allyson said.
Recently, the entire family went to see the movie.
As a family they try to go to places everyone will enjoy, including Faith, like visits to the Children’s Museum, Underwater World, the zoo, and other family kinds of events.
Looking farther into the future, the Dressels are very aware that they are going to need an additional room added on to their home for Faith, or will need to purchase a four bedroom home.
They currently have only three bedrooms in their home and Faith really needs a room to herself because of all of the equipment and the round-the-clock nursing care.
The living room of the Dressels’ home is currently being used as Faith’s room a room that is welcoming and seems to be a place where the family tends to gather much of the time.
For now, the family is taking it just one step at a time, changing what they can, and taking time out of every day to appreciate what they have.
Their appreciation includes both sets of grandparents, who Gary and Allyson consider very lucky to have. Allyson’s parents are Harland and Darlene Westrud of Maple Lake and Gary’s parents are Ron and Sue Dressel of Waconia.
The Dressel’s home is exactly one-half hour from either set of grandparents, a location that has been to their advantage.
Both sets of grandparents take turns watching the children to give Gary and Allyson some time off and a break from their very busy lives.