Meet Presleigh, our 2013 Ambassador
Presleigh Brue, of Ottawa, daughter of Katie Knottek, turned three in 2013. She
was not reaching typical 1-year old milestones and in June, after a year and a half of various medical tests, Knottek was told her daughter had Rett syndrome.
Rett syndrome is a genetic neurological disorder, usually not apparent until after 6 to 18 months of otherwise normal development and results in delayed development that can lead to lifetime impairments. In Presleigh's case, she is unable to stand, walk or talk.
Presleigh first came to Easter Seals in January 2011 and has received physical, developmental, speech and occupational therapy.
Knottek fought back tears as she shared Presleigh's story and her gratitude to Easter Seals.
"Without Easter Seals I couldn't work and we're so pleased with the improvements since she's been here. We've been told that Rett Syndrome can be reversed so we're very hopeful," Knottek said.
"Presleigh has had a lot going on since her days at Starved Rock Center. In 2016, she was granted a wish from Make-A-Wish. We chose to go to Disney World for a week, and it was honestly the best week of our lives!
This past year was Presleigh’s hardest year living with Rett Syndrome. Her seizures increased, and new medication was introduced. She was also diagnosed with a heart condition in December 2017, and had surgery for a feeding tube to be placed in January 2018.
Since then, she has gained 17 pounds!! She’s missed almost an entire year of school due to being in and out of the hospital several times. Despite these setbacks with her health, she continues to overcome the challenges life has given her...and all with her beautiful smile shining through!
She recently celebrated her 9th birthday, and we are wishing for a healthier year."