"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

Tuesday, July 8, 2014

Fundraiser Success!

I sent off all the donations to the Dravet Syndrome Foundation - $1500 total!! What a great success!! I just wanted to thank you all again for your support... it means SO MUCH to us!!

The Dravet Syndrome Foundation posted a little story about our fundraiser on their website here: http://www.dravetfoundation.org/archives/4370

Last Call for Little Luella Shirts
I will mention one last time that a final order for Little Luella shirts will be going in on Friday of this week (July 11th). Right now we have an additional 50 shirts to order!! We are so overwhelmed by the support we have received for these shirts!! We'll have about 180 people wearing these shirts when we are done!! What a GREAT way to raise awareness for Dravet Syndrome and show support for Luella!!! The price for the shirts will be $13 or LESS at this point. Once again, I'm happy to mail shirts to people not local. Read more details about the shirts on my last post here - http://littleluella.blogspot.com/2014/06/still-want-little-luella-shirt-new-order.html

Luella Update
Luella has been doing about the same. She is still averaging about a seizure every week. We added a new medication and are gradually increasing the dose. We are hopeful that it will help her go even longer between seizures.

Many have asked about the status of the medical marijuana for Luella. In case you missed previous posts - it did pass in Minnesota but unfortunately we have to wait a year or more to get access. July 2015 is when it is scheduled to be available. The state is allowed one six month extension, so at the latest it could be January 2016. While we wish we could have it right now, we are so thankful that it is in the works and we don't have to wait for the next legislative session to present another bill!

Thank you for following us on this journey with Luella - for your support and most importantly your PRAYERS! We serve a mighty God....

                        “What no eye has seen,
                                what no ear has heard,
                         and what no human mind has conceived”
                                the things God has prepared for those who love him.
                                                                              1 Corinthians 2:9

Thursday, June 26, 2014

Still Want a Little Luella Shirt?!? New Order!!

After so many people saw us all wearing our shirts around on Monday we've had lots of requests for shirts. We will be doing another order mid-July. The cost will probably not be as low as before but it'll for sure be under $20 - most likely anywhere from $13 to $18 depending on the response. I will be happy to ship shirts to people who aren't local too! We want to spread awareness far and wide!

If anyone sees you wearing your shirt and asks about one - send them my way!!

And PLEASE send me pictures of you wearing your shirts!! I would like to make a slide show to share on Luella's blog.

If you are interested in a shirt please email me (heather.m.johnson@gmail.com) and let me know! Sizes available are -
Youth: YXS, YS, YM, YL, YXL
Adult: S, M, L, XL, XXL and XXXL (XXL and XXXL will be $2 extra).

A sizing chart can be viewed here: http://www.customink.com/items/sizing/04600_lineup/standard.htm

The shirts will be ordered locally again at Print Express!! They did a tremendous job!

Here's the finished shirt design (as printed at Print Express)...
The butterfly is made from Luella's hand prints.

Tuesday, June 24, 2014

a cake 4 a cure: WINNER!!

Hi everyone!! I was so excited to draw a winner for my fundraiser today! I had an initial goal to raise $500 for the Dravet Syndrome Foundation... That goal was reached quickly so I increased my goal to $1000 and our very generous friends and family helped us surpass that goal as well!!
We ended up raising $1,340!!! 
That is so exciting!! I can not wait to send that money to the Dravet Syndrome Foundation!! Thank you so much to everyone that contributed!! You are amazing!!

I took a video of me doing the drawing so you'd know it was done far and square!! :-) So many friends and family are included in the drawing and I didn't want anyone to think I was playing favorites!!

The winner is.... Lucas and Wendy Peters!!! 
YAY!! I'm SO incredibly excited to get to make a cake for you sometime!!

Here's the video of the drawing...
( http://youtu.be/mdWOmxpkmPQ )

Monday, June 23, 2014

A Perfect Purple Day

Wow! The first Dravet Syndrome Awareness Day was so much fun!! We saw lots of purple around town and online!! If you wore your purple and snapped a picture, please share it with me!! I know some people didn't have their Little Luella shirts in time so whenever you can get a picture in your shirt please take a picture and email me or post it on facebook! I hope to put together a little slide show soon!

If anyone wants a shirt and didn't order one, please let me know if you'd like to be on a list to get one. Once we have enough interest we'll do another big order! Thank you!!

It was all about Luella today!

Sisters = Love
Shirt design!!
Our family in purple!

Ending the night at Pizza Ranch!! Thanks to the friends who wore their purple out to eat with us!
Thank you to everyone who supported us today and helped raise awareness for Dravet Syndrome!!

Stay tuned tomorrow for the 
winner of the cake raffle!!

Sunday, June 22, 2014

Wear Purple on Monday - Last Day for Cake Fundraiser

Monday - June 23 - is Dravet Syndrome Awareness Day!! Don't forget to wear your purple!! If you have a Little Luella shirt please wear it and if you can, please share a picture with me!! You can share a picture of whatever purple you happen to wear! We'd love to see you showing your support and helping us raise awareness!

Monday is your last chance to enter my fundraiser / cake raffle - {a cake 4 a cure}!! If you want a chance to win a custom cake made by me, don't delay! I will announce the winner on Tuesday!! I can't wait to see who I get to make a cake for. To enter the raffle contact me or make a payment online on the fundraiser website before midnight on Monday! http://www.youcaring.com/other/a-cake-4-a-cure/176868

Monday, June 16, 2014

One Week until Dravet Syndrome Awareness Day - - Win a CAKE!!

One week from today on June 23rd it will be the very first Dravet Syndrome Awareness day!! If you haven't entered my raffle / fundraiser {a cake 4 a cure} - NOW is your chance!! Read all the details for how to enter on the fundraiser website here: - http://www.youcaring.com/other/a-cake-4-a-cure/176868

So far I have raised $795!!! Help me reach $1000!!! All money will go to the Dravet Syndrome Foundation to help find a CURE!!

THANK YOU to all of you who have already donated!!!

Wednesday, June 11, 2014

$10 Little Luella Shirts - Last Call

I've gotten such a tremendous response for the Little Luella t-shirts so our cost has gone way down!! The shirts are $10 (a couple extra dollars for sizes larger than XL). I decided to work with our local printing company and they have been so great to work with!! I'm happy to keep the business local! I will put the order in Thursday morning. If you live far away I will ship your shirt to you when it's done.

The price goes way up if we place smaller orders later - so if you want one please let me know.

We had to slightly modify the design to accommodate the printing processes available locally but they still look great!!