Written by: Jeremy Baumhower
I was one of those. I was one of the vast majority. In 2006, I had never heard the word “progeria” before.
It was Marla Halko who introduced me to the word and what it meant.
I remember asking Marla to repeat the word and again explain the disorder to me. We were having a phone conversation about booking her family as guests for the Tower 98.3 radio show that I was on. Marla was trying to promote Kaylee’s 5K Run. She finally referenced Brad Pitt’s The Curious Case of Benjamin Button, and I was beginning to comprehend. I still had no idea.
The morning a then 3 year-old Kaylee Halko walked into the studio forever changed my views on humanity and parenting.
Kaylee was shy for like 30-seconds before she finally opened up and let herself fill the room. She was outgoing and charismatic. I watched in amazement as Marla spoke into one microphone, informing Toledo of the incredibly rare disorder her daughter had, while watching Kaylee act like she was lip-synching into another. Kaylee was behaving the very same way my then three year-old daughter, Kacee, would when she would visit the studio.
Its these moments when you see a child, similar in age to one of yours, dealing with something you can not understand, where you see how lucky your family has been to have four healthy children. I wasn’t just blown away by Kaylee’s personality and heart; I was overwhelmed with amazement that the Halkos were trying to raise awareness and make a difference, while raising a child with progeria.
I promised Marla when she left the studio that day, that I would always be there for her family, from promotion of any charity event to everything else.
Toledo can be a small-town. Kaylee’s older brother, Brendan, plays baseball and so does my son, Braden. Brendan and Braden played numerous games against each other throughout the last several years. During these baseball games Kaylee and my Kacee would occasionally play and run around. My daughter was born just two months before Kaylee.
Brendan and Braden, Kaylee and Kacee; you can start to understand my belief in karma.
The Kaylee I met 8 years ago, is the same girl you’d meet today. She is fearless, confident, energetic, outgoing and loving. She changes the dynamic of every room she has ever entered. Kaylee has inadvertently become a teacher of acceptance, one who proves the theory of where true beauty lies. It is for these various reasons why her being bullied has affected me and everyone around her.
Earlier this year Kaylee’s 4th grader classmate and an older sibling, created some Instagram accounts titled “Progerian_Haters” and “PROGERIANS_KISS_MY_ASS”. One account proclaimed “Progerians are from other planets. They have ugly f–king vein heads, they do belong to satin(sic). One day the progerian apoclypes will everyone” while other was more simple in it’s hate stating “Why don’t those f–king aliens die!!”. Very few things have negatively affected my view on humanity as much as these Instagram pages.
To make matters worse, the school and the Anthony Wayne School District believe this was not a case of “bullying”. Let me repeat it… in the school’s eyes these hate-created pages was not a form of “bullying”.
I have a theory as to why this happened and why it has not become a bigger national story; no one knows or can relate to progeria. It is simply too rare.
Can you imagine the national uproar if instead of progeria Kaylee had cancer, where chemo took her hair and these Instagram pages proclaimed ““Cancer patients are from other planets. They have ugly f–king vein heads, they do belong to satin(sic).” or “Why don’t those f–king cancer patients die?”. Can you imagine what the outcome would have already been if Kaylee was a minority and these children used the n-word?
Progerians are so rare that there is a not a hate-inspired slur for them.
The school district’s response and lack of action have made the Halkos decide to sell their home and move. They’ve made a choice to put Kaylee’s safety first. I can’t blame them.
One of the biggest causes of death for those afflicted with progeria is accidental head trauma. Their bodies are so fragile that lives have been ended as a result of falling and hitting the ground. Imagine what a push from behind or even worse.. what a punch could do?
In all of my columns talking about Kaylee I have purposely refused to list this following fact. It breaks my heart to have to do so now. According to progeria research, “Children with Progeria die at an average age of thirteen years.”
Kaylee Halko celebrates her 11th birthday in a couple of weeks.
One of the hardest things in any child’s life is when their family has to move, resulting in a new school. Kaylee’s already hard life, just got a little bit harder.
If your heart is not broken… while simultaneously clenching your fist, then we can’t be friends.
This is the part of the story where you can make a difference. The moment where we go from hitting the “share” button Facebook to being for a family when they need it the most.
This Monday morning, June 30th at 8 AM, Marla Halko has been approved to address the Anthony Wayne School board about the district’s response to Kaylee’s bullying. This public meeting will take place at Anthony Wayne School Administration Center, located at 9565 Bucher RD, Whitehouse, OH 43571.
I think Marla Halko and her family should not stand there alone. The Anthony Wayne School board needs to see how affected this community is by their inaction. They need to feel the love we have for this family and this special little girl. If there was ever moment where simply your presence would send a message, this is it.
- If you are sickened by those Instagram pages, you need to #BeThereForKaylee
- If you are furious the Halkos are moving, you need to #BeThereForKaylee.
- If you don’t agree with the way AWS has handled this situation, you need to #BeThereForKaylee.
- If you have dealt with a bully or had a child who is/was bullied, you need to #BeThereForKaylee.
- If you have learned about Progeria from Kaylee, have raised monies for it’s research, you need to #BeThereForKaylee.
- If Kaylee has impacted your life, if she has taught your heart a lesson it had not yet learned before, if you think she has made the world and our community a better place by existing in it, you need to #BeThereForKaylee..
If a child with progeria can be bullied, what child is safe?
I will be there Monday morning keeping a promise I made a long time ago. I hope many of you will stand next to me. Kaylee and the Halkos are worthy of your time, support and love.