Staff
Feb. 28 marked Rare and Genetic Disease Day and students at St. Michael’s School here were dressed in blue in recognition of a fellow student.
Students assembled in the gym Tuesday morning to learn more about Laura Ahrens and her rare disease, CDKL5.
Mrs. Wood, the classroom teacher, and Ms. Hamilton, who works with Ahrens one-on-one, both spoke about the youngster and the disorder.
The students also watched a video about CDKL5 and awareness that featured their schoolmate.
Afterwards, Hamilton handed out treats to a handful of students who are very close to Ahrens.
This included students who say hello to her throughout the day, give her “the best hugs,” and spend time with her after school and in the summer.
Hamilton said St. Michael’s has raised about $800 for the “Hope4Harper” charity that seeks to increase CDKL5 awareness and search for a cure.
According to the International Foundation for CDKL5 website, the disease results in “early onset, difficult to control seizures, and severe neuro-developmental impairment.”
Like Ahrens, most children with CDKL5 are confined to a wheelchair and are dependent on others.
Problems associated with CDKL5 include scoliosis, visual impairment, sensory issues, and various gastrointestinal difficulties.
Hamilton also explained to the children that CDKL5 can cause disrupted sleep patterns, which is why Ahrens often takes naps throughout the day.
Students and staff were given blue ribbons while some staff members also wore jeans to show their support for those with rare and genetic diseases.
