All about our Luella and her battle with seizures and Dravet Syndrome.
"The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.” Deuteronomy 31:8
We've
decided to transition from a public blog to a more private Facebook
group for updates on Luella. Luella feels better about us sharing things
when we can have a little more control over who sees the information.
As a nod to our "Little Luella" blog title, our new Group is "A Little About Luella" - our little girl is growing up!!
It's Dravet Syndrome Awareness Day and that means it's the end of our fundraiser!
It's winner time!! Do you know that we actually PASSED the HUGE GOAL I set!?!?! I was completely blown away by a donor rounding out the fundraiser at the end to bring us to the goal!! I was IN TEARS!! Thank you from the very bottom of my heart to all those that donated - BIG AND SMALL - it ALL helps!! We have the best friends, family, neighbors and community!
That means, in the past TEN YEARS you have helped us send OVER $23,000 to the Dravet Syndrome Foundation to find a CURE!!!
It was so fun for me to do the drawings tonight. We just picked Luella up from a week at Camp Oz - a camp for kids with epilepsy. She had a great time and was excited when we hit the goal today!
Picking Luella up from camp today. Everyone loved our matching shirts! Great way to raise awareness!!
And now for the exciting announcement!
WINNER #1 of a
cake 4 a cure is... (drumroll)
Kaitlyn Strassburg!
AND WINNER #2 is...
Alyssa Larson!!!
Congratulations!! And thanks again to EVERYONE who contributed to this fundraising effort!! We have some AMAZING supporters and we are SO VERY GRATEFUL to all of you!!
196 days. That was the number this time. The number of days between seizures. You just never know when the next one will strike. You get in a groove. You contemplate letting her have more freedom. And then the next minute you have a 13-year-old, out cold on the concrete. Thankfully she wasn't alone and thankful for grandma's foot, catching her head to spare a big goose egg or worse. Less than a week away from her leaving for camp - grateful it's a camp for kids with epilepsy, a camp where they are prepared for any situation, with doctors and nurses nearby at any given moment, because, you just never know...
We are in the midst of my big fundraiser for the year - a cake 4 a cure. We were so happy that Luella has gone over 190 days seizure-free. But... you just never know. That's how Luella's whole life will be. All just a variable. When will the next seizure be? That's why we fight for a CURE and raise as much awareness and money as we possibly can! She needs a CURE. Thousands of kids like Luella need a CURE. They need to have days that aren't variables. Days they can count on. Will you PLEASE help us raise money for a CURE?
So many of our friends and family have stepped up and we are almost half way to the goal of $10,000. Let's do this!
You just never know.... what a group of determined people can accomplish!!
I can hardly believe "a cake 4 a cure" is TEN YEARS OLD! Over the years we've raised over $13,000 for the Dravet Syndrome Foundation (DSF) in honor of Luella to help find a CURE!
This year I'll be drawing TWO WINNERS to celebrate our big milestone year! I also have BIG GOALS this year for fundraising! TIMES TEN!! I usually set a goal of $1,000 and we've always gone over that goal. This year I have a HUGE goal of raising $10,000!! Can you all help us out?! I would love to celebrate year 10 with 10 grand! PLEASE SHARE!!
Our fundraising site has been set up by the Dravet Syndrome Foundation and you can donate directly to DSF here: acake4acure.com
If you'd like to donate cash or a check, please give your donation directly to Jim or Heather. Checks can be made out to "Dravet Syndrome Foundation." Please contact me if you have any questions. If you'd like to donate but do NOT want to be included in the drawing, let me know.
But wait, THERE'S MORE!!! One of my most favorite celebrity bakers - Joshua John Russell of "You've Been Desserted" and formerly "Man About Cake" is partnering with me and he will personally send each winner a gift basket of goodies!! How awesome is that?!? THANK YOU JJR!! You guys, he is the BEST!!
More details on the raffle can be found on this post below!
The donation site will close at NOON on June 23rd and
So, how does this work exactly?
Every $5 you donate gets you one entry into the drawing. I will keep track of the number of entries you get. Please note if you live far away you will not win a cake but I will ship 2 dozen cookies (decorated sugar cookies or chocolate chip cookies)! I
will deliver a cake to the winner within a 100 mile radius of Luverne, MN - or you may choose to pick up your cake. If donate and you don't want to be included in the drawing please let me know.
**Now for the fine print...
1.
I will only deliver within 100 miles of Luverne MN OR you may arrange to pick up the cake in Luverne. NOTE – If
you live outside these areas, you may still donate but you will NOT be
eligible for a cake UNLESS YOU pick up or you may choose cookies
that I can ship.
The winner from 2020 had cookies shipped!!
2. The cake will be a 10" round cake (or equivalent). This would be a great sized cake for a birthday with 20-25 guests! 3. Level of detail is to my discretion but we'll coordinate on the design. 4. Cake
must be “ordered” at least 4 weeks in advance. I will try to be
available, although please understand that we might be busy. I would ask that you be flexible and have
another occasion in mind. 5.
The donation website will close down at noon on June 23rd and the winners will be announced on Luella's blog later that evening!!
6. The winners will be randomly picked by using wheelofnames.com. If you'd like to follow Luella's Blog please visit: http://littleluella.blogspot.com/ If you'd like to learn more about Dravet syndrome or the Dravet Syndrome Foundation, please visit: http://www.dravetfoundation.org/ To
find out more about my little cake/cookie hobby, check out Embellished Luv on facebook!
You can see some of the fun cakes and cookies I've made in the past. PLEASE NOTE: I'm currently NOT taking orders. I'm busy with other things these days, BUT the two winners of the raffle will definitely get a cake!! (or cookies!) Thank you!!! I can't wait to announce this year's winners!!
AND please share!!
Luella on the first Dravet Syndrome Awareness Day in 2014. June 23rd is all about her!
Get your purple ready for June 23rd!
Some of the many warriors we fight for!
Luella had five seizures last year.
She made it to 759 days seizure-free in 2021. We hope to get back to some long seizure-free
stretches once again. She's come SO far from the early days with Dravet and we are so grateful for your support over the years!
