Building Dreams Together: Hayden's story
This is the fifth in an ongoing series of stories about some of the children we are helping through Building Dreams Together: The MultiCare Campaign for Healthy Children.
Hayden Hagstrom, a loving, sensitive and affectionate child, was born with microcephaly (a small head).
Though subsequent MRIs and CT scans appeared normal, Hayden’s pediatrician, Dr. Belinda Rone, suggested that he undergo genetic testing.
Dr. Ian Glass, a specialist at MultiCare Mary Bridge Hospital and UW Genetics, gave Erin and Greg Hagstrom the news: Hayden had an extra piece on the tail of the fifth chromosome, a condition Dr. Glass had never before seen. (The Hagstroms call it “Hayden’s syndrome,” since he is the only person known to have it.) The fifth chromosome affects the frontal cortex of the brain, the neurological system that affects decision-making.
Dr. Rone referred him for occupational therapy. Initially, at age two, Hayden had occupational therapy at the Children's Therapy Unit and speech therapy at Mary Bridge twice a week.
Eurie Chen, Hayden’s occupational therapist, worked with him on fine motor skills. She tested him and designed his treatment program, focusing on strengthening his ability to grab objects and maintain his hold on them.
Hayden is developmentally delayed in gross motor skills (such as balancing and jumping) and fine motor skills (such as holding a pencil or unbuttoning a button), as well as speech and social skills.
He has the cognitive ability of a child approximately six years old, in addition to sensory integration disorder and ADHD.
His therapist works with Hayden once a week, focusing on improving his balance, social and fine motor skills, and eating habits.
Hayden, now 11 years old, is making amazing progress with everything they work on weekly, including the balance needed to ride one of the CTU’s big bikes.
He’s also making great strides in social skills with the help of another child with similar challenges. They enjoy making smoothies together and encourage one another to expand the types of foods they’ll eat, a challenge for Hayden in the past.
Eurie works with the entire family, including Hayden’s eight-year-old sister.
“She’s like a family member,” says Erin. “She’s a light of hope, support and love. We’re so thankful. Hayden would not be where he is today without her and the CTU.”
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