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Last Wednesday, I had the pleasure of meeting Maralyn Lewis and her mother, Ammiegail Simpson.
Maralyn is 8 years old with curly red hair, pale skin and a beautiful smile.
While we talked, I discovered that Maralyn loves watching shows on Nickelodeon and the Disney Channel. She also loves to sing and wants to be a singer when grows up so she can buy a house with chandeliers and get her mother a maid.
Maralyn and I have several things in common — we both love Taylor Swift and (I’m outing myself on this one) neither of us can ride a bike without training wheels.
On the surface, Maralyn reminds me a lot of myself at her age. No we don’t look alike, but I had similar interests growing up and I always thought I’d be a famous singer.
But there is one area where Maralyn and I are definitely different.
Maralyn, at 8 years old, is so much stronger than I could ever hope to be.
I didn’t meet with Maralyn and Ammiegail to talk about TV shows and favorite singers.
We met to discuss a condition Maralyn has had since she was 6 months old — hydrocephalus.
Having hydrocephalus means Maralyn gets an excess of fluid buildup in her brain. To treat this, she has a shunt that drains the extra fluid into her abdomen. Maralyn also suffers from pseudotumor cerebri, which means even more pressure on her brain. It’s the type of pressure that would exist with a brain tumor, but no tumor is present.
Because of these conditions, at times the pressure in Maralyn’s brain has gotten up to four times the amount that is considered on the upper end of normal. And she’s still alert and cognitive.
Maralyn is so used to the pain that what would feel like an unbearable migraine to us, is considered a “good” headache for her.
So when you learn a little more about Maralyn, you see that her red curly hair covers scars from multiple surgeries, her skin is pale because going outside when it’s above 65 degrees brings on severe headaches and she’s smiling because she’s not hurting enough to cry.
To me, Maralyn and her mother, Ammiegail, are the definition of strength.
Maralyn has probably felt more pain in her eight years than any one person should feel in a lifetime, and Ammiegail has had to watch her go through it. You know that can’t be easy.
Maralyn and Ammiegail are also pretty humble. During our meeting last week, Ammiegail mentioned that a team participated in the Walk for Hydrocephalus on Maralyn’s behalf in Louisville over the summer. She casually mentioned that donations are still being accepted on Maralyn’s page online.
Through a little investigation of my own, I discovered that Ammiegail is the top fundraiser for Louisville’s walk, and Maralyn’s team is ranked at No. 1.
Ammiegail hopes that raising awareness about hydrocephalus will eventually lead to a cure, and she’s certainly doing her part.
For your sake, Ammiegail, and for Maralyn, I certainly hope they find a cure.
Follow Shannon Brock at email@example.com.