Harper has the qualities of a great Poster Girl. Her heart-melting smile, colorful pint-sized wardrobe and friendly, outgoing personality make her a fabulous fit for visiting local schools and meeting children and teenagers.
When the adorable 21-month-old started a toddler group at the Spokane Guilds’ School & Neuromuscular Center, she quickly made friends.
“She loves people and likes to smile at everyone we see,” said her mom, Hagen. “She’s very good at brightening the day for others.”
Harper has made amazing progress on the heels of two open-heart surgeries, including one right after she was born, a stroke, the placement of a feeding tube and other challenges relating to 22q syndrome. The syndrome, caused by the deletion of a small section of chromosome 22, can result in medical and developmental challenges, including heart defects, immune system challenges, poor eyesight and delays in speech, growth and learning.
When Hagen was pregnant, she let her obstetrician know that she had concerns about heart defects because of family genetics. The doctor ordered a fetal echocardiogram. It detected a narrowing in the aortic arch.
“You go into a daze almost,” Hagen recalled. However, she said, the knowledge that the baby had a heart defect allowed her doctor to be prepared. Harper was delivered by C-section. From that moment there were concerns and then she was admitted to the neonatal intensive care unit before her first surgery at just five days. She went home after 35 days. She was in and out of the hospital for the year to follow.
Hagen and her husband, Parker, both grew up in North Spokane and have great support from their families. Harper is the first grandchild on Hagen’s side of the family and the first granddaughter for Parker’s parents. So, there is plenty of love all around.
The Spokane Guilds’ School entered the family’s life when Harper was just three months old and she started receiving a comprehensive program of physical, occupational and speech therapies at their home in Deer Park. Hagen, who previously taught elementary school, took a job teaching an online English as a Second Language program for Chinese students so she could be home with Harper. Parker, a plumber, works for a Spokane company.
Although Harper struggles with vision and hearing deficiencies, she is mastering mobility and can walk, navigate stairs and effectively communicate, among other accomplishments.
“She’s doing great. She’s meeting huge milestones and is starting to do a lot more things independently,” Hagen said.
Harper recently started participating in a toddler group at the Guilds’ School where she enjoys making creations with Play-Doh, socializing with new friends and learning sign language. Harper’s first signed word was “puppy” a reflection of her close ties with the family’s dogs, Buddy and Lucky.
“She’s picking up sign language fairly quickly and is up to about eight signs,” Hagen said, adding that Harper is very communicative and can verbally say “MaMa” and “Hi-Ya” and is close to saying “DaDa.”
Books featuring animals are her favorite and the “First 100 Animals,” picture book travels with them everywhere. Harper has also developed an interest in helping with laundry and letting people know when she is all done with something.
Hagen appreciates the strategies they receive from Harper’s therapy team, as well as the communication, collaboration and support. Advice from Harper’s therapists has helped the couple adopt exercises and activities at home to help their daughter reach milestones.
“The Guilds’ School is like a family!” said Hagen, adding, “We are very lucky for their constant love, support and dedication.”