An Aunt's Plea

From Aunt Chantee



I have loved reading all of the stories on the blog about Destiny. When Tammy asked me to write about some of my favorite memories I thought it would be very simple, however it has not been, I think mostly because I feel like I shouldn't have to be doing this to raise awareness and funds for life-sustaining meds.


When you become an aunt, all you see is a future of spoiling the kid and teaching them lots of naughty stuff (which I still do). As the other stories have said Destiny is a special girl that will touch your life and heart, but I think many people would say the same about many other children, and Destiny is NOT other children. I have tried to think of a way to make my words help someone understand what a joy and true delight this little girl is. I give up! I have been lucky enough to know Destiny from day one, and even before that. I was shocked to find out Tammy was pregnant again just months after Benny was born, but secretly I was happy and hoping for a girl.

Before Destiny was even 1-year-old, her family moved from Utah to Colorado, which was very sad; Destiny and Benny were a part of my daily life. It has given me a reason to travel, and I find I can still sometimes spoil through the mail. I have made it out a few times each year, and they come to my house (to give their mom a break) a few times each year.

Destiny was here just last Christmas. We knew she was having seizures (only two major seizures while she was here - one at my mom's feet) but we didn't knowabout the Dravet Syndrome. She still seemed like a mostly normal functioning little girl. It wasn't until her visit this summer that it really started to sink in. Now I cringe as I log on to Facebook and read the updates. The texts I receive from Tammy have changed drastically from happy little update about the kids and what they are doing that day, to updates about Destiny's condition. I feel helpless here on the other side of the mountain.

PLEASE take time to read ALL of our stories and PLEASE pass them on. Please help and pass this on to everyone you know. The goal is to raise money for Destiny's medication but the least we can do is raise awareness. PLEASE understand that these meds mean a slowing of the multiple daily seizures and a slowing of Destiny's regression after the seizures. Try to think about this from a family's perspective, how it effects their daily lives, and thank God your only reading this blog and not living it.

Now for a Destiny story.



This June I had a daughter named Sophie. When Destiny came to visit it was like she had a real life doll. She wanted to hold her and carry her all around. When the baby was sleeping Destiny would sneak into the room to check on her many times always being very quiet. I think the highlight for Destiny was getting to give Sophie a bath in the sink. Destiny was so excited and kinda sang a little song while scrubbing the baby. Now, Sophie cried the whole time which is odd for her - she loves bath time, but it was worth it to see how happy Destiny was with her real life dolly. She even helped lotion and put a new diaper on the baby, being so gentle the whole time. I cherish the pictures we have of the two little ladies together and I feel grateful that my child has such a special cousin.



NOW let me just finish by telling you what I want! I want Destiny to be able to grow up and babysit her cousin and teach her all of her little songs and dances and even how to be a little naughty sometimes! Destiny has so much to offer. PLEASE help us get the medication here ASAP! We are asking for this help because WE NEED IT! Thank you for taking some time to read this, making a donation and passing on the many others that may be able to help!



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