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Chloe’s Story

On April 30, 2010 our world was turned upside down when we learned our sweet little girl had a genetic disease called Tuberous Sclerosis. TS affects people in a variety of ways, causing tumors in the brain, eyes, heart, kidneys, skin and lungs. It is the leading genetic cause of epilepsy and autism.


For Chloe, TS means abnormal growths in her brain that cause seizures, a brain tumor, lesions in her eyes and white spots on her skin. Chloe also has Polycystic Kidney Disease, which is sometimes related to TS. Her main symptom of this is high blood pressure. She will eventually need a kidney transplant. We are praising God for Chloe's healthy heart and praying for total healing.

 

Latest Journal Update

Spring 2015 trip to Memphis

We just returned from another visit to Le Bonheur Children's Hospital in Memphis. Our good friend Shayhna went with us, and was a huge help with the driving, caring for Chloe and keeping me sane. 

Chloe received mostly good reports from both doctors. Her blood pressure was higher than usual, but that could've been because she was so excited to see Dr. Bissler. Seriously. She loves going to the hospital because she gets to hang out with such cool doctors and nurses. 

Matt is going to take her blood pressure twice a week for the next two weeks. Then I will email the results to the doctor, and he will let us know if we need to increase one of her BP meds. 

On the neurology side, Chloe's brain tumor is stable. We are still awaiting lab results, and based on those, we might even be able to lower her Afinitor, which would be awesome because we hate the mouth sores that come along with it. 

Chloe's sodium levels are low but not too low. Low sodium levels can actually be deadly, but thankfully Chloe's is not that low. Hers is caused by her seizure medication, Trileptal. We basically just need to keep an eye on it. 

The neurologist said he doesn't need to see her back for nine months. We are waiting to hear from nephrology to find out if we can hold off that long for a kidney checkup. 

All in all, it was a good trip. We didn't make it to the zoo because it was raining and cold, but we made the most of it. On the way there, we got to see one of my good friends and her family in Alabama. And in between appointments, we saw "Paddington" at the theater, met up with some Memphis friends and ate lots of good food. 

Before I sign off, I better tell you about our next Step Forward to Cure TSC walk. It's scheduled for 10 a.m. September 26 at Jarvis Creek Park on Hilton Head Island. Please follow this link to make a donation or sign up to walk: http://giving.tsalliance.org/site/TR/Step_15/StepForward?team_id=2750&pg=team&fr_id=1220 We would love to see you there!





Comments

1 Comment

Joe and Lillie Pagani
By Lillie Pagani
You and Matt are awesome parents....of course Chloe does her share too.
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