CAMP OZ!

What a week it was!! Luella attended Camp Oz in Hudson,WI June 19 - 24 and had a blast! She's already talking about camp next year!

What is Camp Oz? (From the Epilepsy Foundation of Minnesota's website.)

Founded in 1982, Camp Oz is a traditional summer camp that provides a safe and fun camping experience for youth ages 9–17 with epilepsy.

Camp Oz is intended for youth with epilepsy, and siblings, ages 9-17 who have a high level of independence. Traditionally, campers enjoy activities like swimming, horseback riding, team-building exercises, and more. Space includes 15 cabins, two modern bathroom/shower buildings, an indoor lodge/dining hall/activity center and beachfront access. 

Luella was all ready to go to Camp Oz in 2020. You can take a sibling and Ashlyn was also signed up to go with Luella, then COVID hit. Camp was cancelled. This was the first year Camp Oz was back! Luella was ready to go - even without her sister since Ashlyn was also gone that week for a choir trip to NYC.

Jim and I dropped Luella off at camp on Father's Day, June 19. It was HOT. No air conditioning in the cabins but it wasn't too bad. Each camper brought their own personal fan. We helped Luella set up her sleeping area and she met her cabin counselors. Luella's cabin had 7 girls, 2 camp counselors and a cabin nurse. I felt very confident in leaving Luella at camp and knew she was in good hands. 

Today pictures from camp were shared with the families and it definitely looked like a fun time. Swimming, archery, games, rock climbing, camp fires with s'mores, dancing, songs, crafts, horses, etc... WHEW! 

Luella filled out a camper survey the last day of camp. One of the questions was, "What was the best part of camp?" Her reply? "Being away from my parents!!" The camp staff got a kick out of that! I get it... she basically doesn't get to be away from us much at home. She gets a little freedom to be outside at our house, or at the neighbors, with friends, but she can't just go to the park or go off on her own. At camp she had more freedom and she loved that! I hope and pray she continues to do so well and can have more experiences like these!

Luella (far left) and her cabin mates.

 

Camp Oz 2022
(Luella is right above the purple heart.)

Camp Oz staff are truly amazing! They are so well organized and they do all the right things to keep kids like Luella safe while away from home and getting to do something so many kids do every summer without any extra thought. A LOT of thought goes into Camp Oz and we thank all those who made this week of camp so amazing for Luella and 60+ campers! 

If you'd like to read the camp blog about the daily activities during
Luella's week you can do that here: 

https://www.epilepsyfoundationmn.org/about-efmn/blog/

WOW! Another spectacular fundraising year!! AND WE HAVE A WINNER!!

 

I'm excited to announce that YOU helped us raise

$1,570

for the Dravet Syndrome Foundation in honor of Luella!! 

YAY!! Thank you SO MUCH to all to our VERY GENEROUS donors!! We could NOT do this every year without all your help!! ALL of this money will be sent to the Dravet Syndrome Foundation to help find a CURE!!
There is some really amazing research happening with Dravet syndrome and we've been blessed to send them OVER $13,366 over the past 9 years thanks to all of your support!!

And now for the exciting announcement!

THE WINNER of a 

cake 4 a cure is...
(drumroll)

Brooke VandenHoek!!

  

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!!

Here's a video of the drawing!!

 

 

Link to video of the drawing:

https://youtu.be/SPaxcQnpxcM

Thank you again and please stayed tuned 

next JUNE for something big for

YEAR TEN!!

 

 

9th Annual "a cake 4 a cure" - DONATE TODAY

 

This year is my NINTH ANNUAL “a cake 4 a cure” fundraiser to raise money for the Dravet Syndrome Foundation to help find a cure for this rare form of epilepsy!! Every year we do this we are so amazed by all the "regulars" who continue to support Luella and our quest for a CURE! If this is your first time donating, we appreciate YOU too!! We could not do this without all of you!

Please visit the fundraising website (GoFundMe) to make a donation.
https://www.gofundme.com/f/uvy2xf-dravet-syndrome-awareness-for-luella

More details on the raffle can be found on this post below! PLEASE NOTE: There won't be anything about the raffle on the donation site at GoFundMe - that is strictly a place to donate. I will keep track of what you donated to make sure you have the correct number of entries in the drawing.

The donation site will close at NOON on June 23rd and 

a winner will be announced later that evening! 

ALL money will be donated to the Dravet Syndrome Foundation 

in honor of Luella and to help find a cure!  

 

Over the past 8 years we've sent OVER $11,500 to the 

Dravet Syndrome Foundation!! 

THANK YOU!!!

Last year's winner was The Nolz Family!

So, how does this fundraising raffle work?
Each entry into the drawing is $5. If you donate $50 - you will get 10 entries into the drawing. 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 in Luverne, Sioux Falls or Estelline, SD areas OR you may arrange to pick up the cake in Luverne.

Please visit GoFundMe to make a donation 
or cash or checks (made out to DSF) 
can be given to Heather or Jim!! 

https://www.gofundme.com/f/uvy2xf-dravet-syndrome-awareness-for-luella

 

 

 

**Now for the fine print... 

1. I will only deliver to Luverne MN, Sioux Falls SD or Estelline SD areas or areas in between 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 the 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. No wedding cakes. Level of detail is to my discretion.

4. Cake must be “ordered” at least 4 weeks in advance. I will try to be available, although please understand that we get busy at times and may have travel planned. I would ask that you be flexible and maybe have another occasion in mind. 

5. The donation website will close down at noon on June 23rd and a winner will be announced on Luella's blog later that evening!! 

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 winner of the raffle will definitely get a cake!! (or cookies!)

Thank you!!! I can't wait to announce this year's winner!!

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!
Share pictures of you wearing purple!

 

 

 

Celebrating 2 years seizure free last summer.

Luella made it to 759 days seizure-free in 2021!

She did have another seizure out of the blue in April - no illness or anything. We are hopeful she is on the way to another long seizure-free stretch!

THANK YOU EVERYONE!!