It's Epilepsy Awareness Month

Have you been wearing purple this month? I hope so! November is Epilepsy Awareness Month and we are trying to educate as many people as we can about epilepsy. YOU can help us!

Get Seizure First Aid Ready!! Take a quick 30 minute on-demand training course from the Epilepsy Foundation. Learn how to recognize a seizure and what to do if someone around you has a seizure. https://learn.epilepsy.com/courses/seizure-first-aid-ready-ondemand

If you invest the short 30 minutes to do the training, PLEASE let us know and share it with your friends and family as well. You might just help save a life! We would LOVE to help educate all our family and friends during this awareness month.  

I took the course just to see what it was like. It's a great resource to help you learn what to do. I guarantee you will learn a lot!

 

Since it is Epilepsy Awareness Month we entered a little contest with the Epilepsy Foundation of Minnesota. If you are a Facebook user, please click the following link and "LIKE" our picture! The picture is our family celebrating Luella's 2 years of seizure freedom back in August! Share with your friends too! 

 

https://www.facebook.com/epilepsyfoundationofminnesota/photos/a.225784514265304/1911765702333835

 

 

Wear your purple this month and share your photos with me on Facebook or email me! Tell everyone why YOU wear purple and help US bring more awareness to epilepsy. 

 

 In the United States, 3.4 million people live with epilepsy, and over 150,000 new cases are diagnosed each year. One in 26 people will develop epilepsy at some point in their life. Epilepsy doesn’t discriminate. It affects children and adults, men and women, and people of all races, religions, ethnic backgrounds, and social classes. While epilepsy is most often diagnosed either in childhood or after the age of 65, it can occur at any age.

 

Thanks for all your love and support!!

 

Long Overdue Post - August Seizure and A BIRTHDAY!

I feel like I've been running in a hamster wheel for over a month! From the Minnesota State Fair, church activities, soccer, school, work, football, marching band, school play, Music Boosters... the list goes on and on! There was something to be said about the simpleness of last year. I am glad to be getting back to whatever "normal" is, but it really wears me out! 

I've failed to keep everyone up to date on Luella in the midst of our busy weeks. At the end of August, Luella had a seizure to end her longest ever seizure free stretch. Two years and 29 days without a seizure! We are so grateful for every one of those days. A high fever is what ended up triggering that seizure. When her temp started going up I just had a feeling it would cause a seizure. Unfortunately I was away with Ashlyn at the MN State Fair. I knew Luella wasn't feeling well after talking with Jim on the phone earlier in the day. Later that afternoon I felt the need to call home and check on things and it was just then that she was seizing - a mom's intuition, I guess. Thankfully no rescue meds were needed but it was a rough seizure and she chewed up her tongue quite bad. Poor girl. 

759 days without a seizure is really amazing and something that many kids with Dravet syndrome do not achieve. We know things might not always be like this and we are so grateful for everyday God gives us. Some people have commented to me thinking Luella was "done with those" - meaning seizures. Comments like that surprise me. We are always ready for a seizure with rescue medication close by. We can never fully let down our guard and that means Luella misses out on some things that typical kids get to do without even thinking twice. While our lives are rarely disrupted by a seizure now, we always have to be prepared just in case.

Just as a reminder, Luella's epilepsy is caused by a mutation of the SCN1A gene and until gene therapy is a standard thing, a cure is unlikely. Of course we hope and pray for healing or a cure, but we also know seizures can happen at any time. It maybe WAS good timing since school was about to start and it was a good reminder to teachers and staff that Luella definitely still needs to be watched closely. Without a paraprofessional with her this school year we've had to come up with other ways to make sure she is accounted for and kept safe at school. We really rely on the teachers and staff to keep a close eye on her and so far the year is going pretty well.

After more than a year of online school it was great for Luella to get back in the classroom! I can hardly believe I don't have ANY kids in the elementary this year. It was time for Luella to move up to Middle School and to the 6th grade! She is really enjoying school and the independence she has in 6th grade! 

And that brings us to October 21st and Luella's 12th BIRTHDAY!! We had fun celebrating at home with family. Next year when she is a TEENAGER we hope to have a BIG celebration! Her request this year for her birthday supper was fried chicken and mashed potatoes! Dessert was salted caramel macarons and BROOKIES!

Teenager... Loading... Please Wait

We decided to extend the birthday celebrating into the next day and since the kids were off from school we headed to Sioux Falls for a little shopping, pizza and roller skating!!

HAPPY BIRTHDAY TO LUELLA!!

Celebrating 2 Years!

Luella had a fabulous time celebrating 2 years of seizure freedom on Tuesday! We had food and ice cream at JJs in Luverne while about 40 people stopped by to say hello! Our one hour celebration turned into three hours! It was so fun to see everyone - some that we haven't seen in quite awhile too! There were several people that wished they could have been there and sent messages, flowers and gifts throughout the day. Thank you everyone for helping to make this a special day for Luella. We hope that we can keep adding seizure free days and maybe celebrate again in a year!

 Celebration Video: https://youtu.be/xsBH3ffcKQs

Luella is excited to be getting ready to enter MIDDLE SCHOOL!! She will be heading back to in-person school in September after a year of online school. She is very anxious and ready to see her friends again! We will be taking a few extra precautions initially until she can be fully vaccinated. I'm not excited for her to be turning 12 in October... I'm not sure how my baby grew up so fast, but I am glad she will be able to be more protected from COVID. We are praying that the COVID cases will go down and all of our kids can enjoy a more normal school year.

I've been asked if I feel like I can let down my guard a bit now that Luella has gone 2 years without a seizure? And yes, to a point I can. We don't watch over her 24/7. She has more freedom to be outside with friends or alone in her room reading or drawing. If we are somewhere right in town I don't always take her rescue meds with me - I know I can be home in just a few minutes. When school starts she will not have a para following her around and no special bus aide to be with her on the bus - just a sibling and a bus driver with us on speed dial. The last three seizures she's had going back to almost four years ago have all been after going to bed at night. That first 30 minutes after falling asleep, especially if she's been sick or not feeling well are the times when I'm more on guard. That being said, Luella had a pretty bad summer-time cold a few weeks ago and she even ran some some fevers up to 101 and she did NOT have a seizure! We are just so grateful for how well she is doing!

She could be seizure-free for 10 years and I'd probably still not completely feel at ease, but we are happy with where she is now and I'm glad she can live a more typical life without seizures disrupting her. Thank you for all the prayers!

Closing in on TWO YEARS Seizure-FREE

August 3, 2019 was the last day Luella had a seizure. It was 10:09 p.m. She had been asleep for less than 30 minutes. She wasn't sick and didn't have a fever. The seizure lasted for about 10 minutes. Why did she have that seizure? We have no idea. Why hasn't she had one since? Answered prayers for sure! So many people have prayed for Luella and continue to pray for her and we are so very grateful! 

When Luella made it to her first year of seizure-freedom on July 23, 2019 we had a fun little Pizza Ranch party and celebrated with lots of friends and family! Eleven days after that party she had a seizure which reset the clock and now... here we are and just about TWO YEARS seizure-free! 

On August 3 we will celebrate! Until Luella can be fully vaccinated we won't have any indoor celebrations with others but we decided we are going to party at JJs!! 

We will be set up at a picnic table at JJs Drive-In in Luverne from 5:30 - 6:30 pm on Tuesday, August 3!  

If anyone would like to join us or if you'd like to drive through and honk or say hello to Luella, we'd love that!! Stop and have supper or grab an ice cream treat to cool off! Wear something purple if you have it!! Look for the purple balloons! 

Bring a lawn chair if you want to sit and visit awhile! Please NO gifts! Luella will just be excited to see you!!

RSVP on our Facebook event - https://fb.me/e/133Tx2W92

 

I'm excited to announce that YOU helped us raise

$1,615

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 $11,500 over the past 8 years thanks to all of your support!!

And now for the exciting announcement!

THE WINNER of a 

cake 4 a cure is...
(drumroll)

The Nolz Family!!

  

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/usfIUk2-WG4

It's Dravet Syndrome Awareness Day AND your LAST day to donate!

 Today is Dravet Syndrome Awareness Day and your last chance to donate to "a cake 4 a cure!" 

Donate now and help us to make it to $1500! If you need more details on the fundraiser, visit our previous blog post for more info: https://littleluella.blogspot.com/2021/05/this-year-is-my-eighth-annual-cake-4.html

Are you wearing purple today? Send us your pictures! A few months ago we did our Dravet Hat fundraiser and several people shared pictures in their hats! Thank you all for your support of Luella and DSF and helping us raise awareness!!

 

 https://youtu.be/1bMqWkRvdME

Stay tuned tomorrow to hear the official
"a cake 4 a cure" winner announcement!!

 

This year is my EIGHTH 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!! How can it be EIGHT years already!? 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 on June 23rd and 

a winner will be announced on June 24th! 

ALL money will be donated to the Dravet Syndrome Foundation 

in honor of Luella and to help find a cure!  

 

Over the past 7 years we've sent OVER $10,000 to the 

Dravet Syndrome Foundation!! 

THANK YOU!!!

Last year's winner was David from Delaware!

YES! You CAN win if you live far away! 

You won't get a cake, but I WILL ship you some awesome cookies!!

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... 

Sugar cookie example of what I could SHIP!!

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.  

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 midnight on June 23rd and a winner will be announced on Luella's blog on June 24th!! 

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!

If you bought a hat, please wear it!!

 

 

Luella celebrated 500 days seizure free 

in December and she keeps going!! 

She is currently OVER 650 days seizure free. 

THANK YOU EVERYONE!!

Did you get a hat?

 

Did you get a Dravet Syndrome hat?

If you got a hat when we did the Hat Fundraiser for DSF a few weeks ago, we’d love to see your pictures. Dravet Syndrome Awareness Day is coming up on June 23 and I’d love to share a photo collage of all those awesome hats out there. 

If you missed out and still want a hat, let me know - I did order a few extra! 

Also, we are super excited to share that Luella is 

650 days seizure free today!!! 

We are so grateful for each and every day enjoyed without a seizure. Luella has many Dravet friends that do not get to experience seizure freedom. Many struggle every day and face so many challenges. Sadly, some don’t make it. We’ve had a few in our Dravet community just recently lose their warriors to this awful battle. We know that Luella’s future is uncertain too. In just over a week I’ll be launching my EIGHTH Annual “a cake 4 a cure” fundraiser. We hope to raise more money to help DSF find a CURE. IN THE PAST 7 years we’ve raised over $10,000 for DSF to fund research for a cure! Be watching for more details!

I’ll leave you with Luella playing “Für Elise” for her virtual spring piano recital. 

https://fb.watch/5tBBr4jZyd/

Thank you!

Wear a HAT, Raise Awareness!

Today we launched a hat campaign for the Dravet Syndrome Foundation! We hope you will participate and buy a hat to help us raise awareness and support DSF's fundraising to help find a CURE! These are awesome, great quality hats! I ordered a sample and they are really nice. They fit Jim's head and adjust nicely to fit me comfortably as well! There are several colors you can choose from. ALL proceeds go directly to DSF from Custom Ink in honor of Luella! We are SOO happy she continues to be seizure-free! God-willing, when this campaign ends on April 4th she will be 610 days seizure-free! That's a lot of days to enjoy without a disruption from having a seizure. We pray that she can continue down this road of seizure freedom and enjoy all the wonderful things along the way!

If you are interested in ordering a hat, click the link below and place your order. If you are local you can select local pick up and I'll let you know when they arrive, probably around April 20th. 

https://www.customink.com/fundraising/dravet-hat

Luella enjoying some outside time with Charles!