Something has broken my heart this week, despite all the beautiful things that have been happening with Myles and Marlee Eckert and their pay it forward campaign.
.
I learned that a schoolmate of Kaylee Halko created an Instagram page of hate for those who are afflicted with progeria. I will not share specifics of the words and images posted because that only creates more of the same, and this world does not need any more of that.
But the Instagram account, which was removed days later, was filled with vile death threats and the ugliest words a princess should ever see.
I have known this fourth-grader since she was 3 years old and before she began school. Kaylee is one of the most beautiful souls living amongst us today.
I did not want to see the photos and comments; my heart can’t take that much ugliness and ignorance. Hearing about them dimmed my spirit.
The most frustrating part of the story is how Kaylee’s school feels its hands are tied because it happened outside school hours and off school property. The student received only a three-day suspension.
My fear is how fragile progeria makes those who have it. According to Progeria Research Foundation, Hutchinson-Gilford progeria syndrome (“progeria” or “HGPS”) is a rare, fatal genetic condition characterized by an appearance of accelerated aging in children.
Although they are born appearing healthy, children with progeria begin to display many characteristics of accelerated aging at around 18-24 months of age. The most common cause of death is atherosclerosis (heart disease) at an average age of 13.
It would not take much to harm a child with progeria. Kaylee weighs only 30 pounds.
This ugly, hate-filled page and its content must not be ignored. It is a red flag and should be treated as such. It’s a sign of trouble in the home and in the upbringing of its creator. If something tragic would happen in the future, this Instagram creation would be the No. 1 warning sign.
This is not a typical case of bullying because Kaylee is beautifully unique. She is not a normal healthy child, but at the same time she’s a typical fourth-grade girl.
She loves Taylor Swift, although she’s not a fan of One Direction — but that just proves she has good taste. The thing that makes her tragically different is her being born with progeria, and the effects it has on her little body.
It should be known that Kaylee is very important to Northwest Ohio and especially to me. Her family has championed fundraising for research and is the perfect example of families working to give back. Even though they have been dealt the hand of a child with progeria, they have turned her story into something positive and incredibly beautiful.
Kaylee’s spirit, heart and soul make her one of the most beautiful people I have ever met. If there ever was a little girl who deserved a happy ending to her story, it would be Kaylee.
Jeremy Baumhower can be reached at jeremytheproducer@icloud.com or on Twitter @jeremytheproduc.
