09/26/2024
Calling all prayer warriors! 🙏🧠🤟🏼
Tomorrow morning (Friday, September 27, 2024) Ily will be sedated for another MRI of her brain. Once she wakes up, we will immediately meet with her neurosurgeon to go over the results. I am praying HARD, and I mean SO HARD, that everything looks amazing! On the outside, Ily is putting on a brave face, but I know deep down she’s extremely nervous and anxious because now that she’s older, she’s more aware of possible outcomes.
Ily has had FOUR brain surgeries for Chiari Malformation and Syringomyelia. She has overcome so much in her short life. Since the last brain surgery, Ily has been doing WONDERFUL and has been living the most “normal” life any pre-teen could! She’s thriving in all honors classes at school, has the best group of friends, and keeps everyone around her in stitches with her witty personality. It’s hard to believe that in 18 days this beautiful girl will turn *TWELVE* — that means our brain surgery journey with Ily started over a decade ago and we have been beyond blessed with the most incredible support system from around the world.
I ask you to please say a little prayer for Ily. Not only for positive results, but for her go to sleep tonight with as little nerves as possible and to wake up with a sense of peace and calmness. She’s my little bestie and I want nothing more than for her to not stress or worry about anything in the world.
September is Chiari Malformation Awareness month! Chiari malformation (kee-AH-ree mal-for-MAY-shun) is a condition in which brain tissue extends into the spinal canal. It occurs when part of the skull is misshapen or smaller than is typical. The skull presses on the brain and forces it downward.
Chiari Malformation is a serious neurological disorder affecting 1 in 1,000 people with the most commonly reported symptom being migraines.
In some people, Chiari malformation may have no symptoms and they don't need treatment. In others, Chiari malformation gets worse over time and leads to serious complications like Syringomyelia, which Ily also has. In people with this condition, a cavity or cyst called a syrinx forms within the spinal column. As the syrinx grows, it can press on the nerves and cause pain, weakness and stiffness.
Ily’s scars tell a story. They are a reminder of when life has tried to break her, but failed. They are markings of where the structure of her character was welded.
She is a fighter.
A warrior.
A miracle.
My little best friend.
To everyone that is cheering, praying, sharing, loving and supporting my beautiful girl... thank you.
This is what her reality is.
We need awareness.
We need a cure.
She has a lot of fight left in her.
🤟🏼♾🧠
[I added Ily’s fight song video from her first two brain surgeries and lots of recent pictures since so many people have asked how she’s been! As you can see, she’s been…. WONDERFUL and is more beautiful and smart than ever!]
