My niece, Cora:
The actual sweetest, happiest, most loving girl. She’s quirky, the most playful gal and I think she takes after her mom and dad in the “fomo” category. ;) She can hang for hours without being grumpy and just wants to chat and dance, like her big brother!
On December 31st, 2022 we found out that Cora has been diagnosed with Dravet Syndrome, an extremely rare and lifelong genetic epilepsy disorder. I didn’t know much about it, and I honestly still have a lot to learn, but I knew it was very serious, heartbreaking, and that Cora had a long journey ahead of her as well as Mackenzie, Brian and Foster.
Before Cora started having seizures in October, I knew literally nothing about seizures alone. When I heard her first one was around 10 minutes long, I didn’t even know that was even possible. This form of epilepsy is subject to very long seizures that can last longer than you can imagine, and are resistant to emergency medicines. Dravet can come with delays in development, speech impairment, sleep and balance issues, and unfortunately much more. I’ve learned that the only thing that is expected with Dravet syndrome, is that it’s really just.. unexpected.
This has been absolutely devastating to our family. And no parent should ever have to see their child go through something like this, and have to see the things they already have. Seizures alone is difficult, but Cora has gone through 3 respiratory arrests, an intubation in which she was in a medically induced coma for around 5 days and caused her to need a feeding tube, etc. and hours before, she was being her cute, happy, playful self and even too much excitement can be a seizure trigger for Cora. It can truly all change so fast. There are really no words for how Mackenzie and Brian have taken this on. They wish they could have half the strength that Cora has, and I wish I had half the strength that they have.
Living so far away, I often feel very useless and helpless and there’s only so much I can do on my end, which honestly isn’t much. If you’ve ever met me, you know I’ve dyed my hair 1 too many times.. and when I saw this fundraiser, I knew it was perfect for me to host because I mean come on.. my wild hair is way overdue! If we reach our goal of $500 in the month of June, which is Dravet Syndrome Awareness Month, I will be dying my hair purple to honor my sweet niece, and spread awareness for Dravet Syndrome and all the cuties affected by it. I feel hopeful that one day we will find a cure for Dravet and any amount of donation, or even spreading the word, is so so helpful and appreciated!!!
