by Amanda Larsen, Mary Free Bed writer

After months of confusion, little Taya was diagnosed with septo optic dysplasia

When 2-year-old Taya (Tay-ya) Cook hums Twinkle, Twinkle, Little Star everyone listens, because she’s fighting to let her light shine.

Taya has septo optic dysplasia, a birth defect resulting in damaged vision and neurological complications. Working with her therapists at Mary Free Bed Rehabilitation Hospital, Taya has proven that her light is so bright that blindness, brain damage, and physical disabilities only make her sweet spirit glow brighter.

Kristen and Mitchell Cook struggled with infertility for many years and decided to pursue adoption. They joyfully welcomed Sophie into their family, and then seven month later – surprise! -  Kristen was pregnant.

After a routine pregnancy, Kristen delivered Taya. The excitement of Taya’s birth was replaced with concern. Something wasn’t right.

At 22 hours old, Taya was rushed to the NICU and diagnosed with bacterial meningitis. She came home 17 days later and received home care.

Kristen Fish, proud mom of Sophie and Taya, now has a realistic look at Taya's bright future

Kristen remembers, “No one explained to me why we needed the extra care, but I was grateful for the help. I assumed that since Taya had recovered from meningitis, she would be fine.”

It was soon clear that all was not fine. Kristen was convinced that Taya didn’t see her. A pediatric optometrist diagnosed Taya with blindness.

Knowing it was going to be a hard road, Kristen and her girls moved back to Spring Lake, Michigan, for family support and better medical care. Kristen was confused about Taya’s condition, but did know that there were physical complications and developmental delays. Her pediatrician sent her to Mary Free Bed.

“Mary Free Bed was life changing,” Kristen said. At 9 months, Taya wasn’t sitting up, rolling over, or eating. Taya started at MFB with physical therapy and orthotics, and continued with feeding therapy.

Kristen recalls, “Taya’s therapists, Rose and Shelly, kicked butt! They helped me understand what was going on and how I could help Taya at home.”

The MFB therapists encouraged Kristen to further test Taya’s condition. Finally, after a year and a half of confusion, Taya was diagnosed with septo optic dysplasia. Kristen and Mitchell were shocked.

Taya has been in physical and occupational therapy at Mary Free Bed for a year and a half. She’s now sitting up, and this month she started to scoot across the floor.

Kristen explained, “Her therapists are realistic with me. We skipped crawling and worked with her on scooting. They take her disabilities into consideration and help me imagine realistic growth….The MFB staff has given me so much information and support. They have become my friends.”

“Our family is so blessed by MFB,” Kristen said. “When I call to make an appointment, they know my name. Taya’s therapists love her and know her. They see how amazing Taya is. Her therapists respect Taya and know that she does everything on her own time.”

This little survivor loves music and claps B-I-N-G-O. She doesn’t talk, but she plays the drums and hums. When she hums Twinkle, Twinkle Little Star she reminds the world that nothing will dim her light.

Tags: blindness, Brain Injury, Pediatric Program