New seizure-free record!

Luella made it to today without a seizure!! That brings her to a NEW SEIZURE-FREE RECORD of 175 DAYS!!! We are so grateful for all the thoughts and prayers to get Luella to this point. We've been through challenging days on this journey and to get here is an answer to prayers! Luella prays every night that God will take away her epilepsy and we hope that someday there will be a cure... until then we are going to enjoy all the seizure-free days we can get!! Today we celebrated with a family swim and homemade pizza at Luella's request! God is good!!

2018 a cake 4 a cure WINNER announcement!

Hello everyone!

I'm super excited to announce that we raised 

$1,640 

through our "a cake 4 a cure" fundraiser this year!! 

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 $7,500 over these past 5 years thanks to all of your support!!

REBECCA ARNDT!!! 

 Rebecca is a friend of Luella's and we are 
SO excited to make a fun cake for her this year!  

Congratulations!!  And thanks again to everyone who contributed to this fundraising effort!! 

Here's a video of the drawing!!

 

We are doing another order t-shirt order if you decide you want one. Let me know before June 29th.

Wearing our new "Team Luella" t-shirts!!

How about helping us celebrate?!?!

Hey everyone! So.... after Luella's last seizure - on New Year's Eve, I decided to stop counting days and making Luella so aware of "records" etc... She was sad last time that we missed setting a new record by a couple weeks. We haven't been counting days and I haven't told her what is coming up VERY soon!! If we continue on this seizure-free path... on Sunday, June 24th... the day AFTER Dravet Syndrome Awareness Day, Luella will have a NEW SEIZURE-FREE record of 175 days!! I'm so hopeful that she will get there this time and every day after that will be a new record! It's amazing how well she is doing and we are SO GRATEFUL for all your love and support! Luella doesn't know about this record and won't know unless she gets there on Sunday!!!

We are SO CLOSE to a new record!!!!

In celebration of Luella and Dravet Syndrome Awareness Day we'd love for you to consider a donation to the Dravet Syndrome Foundation as part of my "a cake 4 a cure" fundraiser! We have a goal of $1500 and we are just a little over half way there with only a few days left (June 23). You don't have to be local to donate... I will pick a winner from all donations and if you happen to be far away I will make you specialty sugar cookies and ship them!

Even though Luella is doing SO well right now... she still has Dravet and she will have Dravet her whole life. She needs a CURE. As she gets a little older we anticipate more seizures as her body changes and hormones take over. That time could be especially bad for her and all the fundraising we do now can help!

Remember to wear PURPLE on Saturday, June 23rd - Dravet Syndrome Awareness Day!! And share your pictures!! The new "Team Luella" shirts are DONE and I'll be picking them up on Monday... so if you ordered, get in touch with me and we'll get you your shirts before the weekend!! I hope to ship the far away ones right away on Tuesday so you should have those too!! Let's make the world PURPLE on Saturday!!

Get those donations in soon!! I'll take checks or cash any time too. (Checks can be made directly to DSF!)

Thanks everyone!! 

Donate HERE!

https://www.youcaring.com/2018acake4acure

In honor of the amazing dad Luella has on this Father's Day! Jim has helped me on this journey with Luella SO much... I could NOT have done this alone! 

 

ONLY 2 weeks left!

Only 2 weeks left for WHAT?!? Well... you only have 2 weeks left to get in on my 5 ANNUAL "a cake 4 a cure" fundraiser!! AND 2 weeks from today on June 23rd is the annual Dravet Syndrome Awareness Day! AND some exciting news.... Luella has continued to remain seizure-free since her last seizure on New Year's Eve... which means if we continue down this path JUNE 24th will mark a NEW RECORD of seizure-freedom for her!

 

PLEASE help us celebrate Dravet Syndrome Awareness Day and Luella's progress by donating to our fundraiser and just maybe you will win a CAKE or COOKIES custom made by me!!
I will not ship a cake but I WILL ship cookies so don't hesitate to donate if you live far away! We appreciate all your continued support to help find a cure for Dravet syndrome! Details on the fundraiser can be found in this blog post - http://littleluella.blogspot.com/2018/05/fifth-annual-cake-4-cure-fundraiser-2018.html

Donation site - https://www.youcaring.com/dravetsyndromefoundation-1186879

We'd LOVE to make our goal of $1500 for 

the Dravet Syndrome Foundation!!

Remember to wear purple this month to help raise awareness!! And especially on June 23rd - Dravet Syndrome Awareness Day!!  

 

If your ordered one of our new "Team Luella" t-shirts, they will be ready soon! 

I will keep you posted on the status!