"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

Wednesday, June 24, 2015

2015 a cake 4 a cure Winner!!

Hi everyone!! I was so anxious to draw a winner for my fundraiser today! My goal was $1,000 this year and all of your generosity helped me to pass the goal once again!! Thank you so much!!

We ended up raising $1,175!!! 

All of that money will be sent to the Dravet Syndrome Foundation to help find a CURE!! Thank you so much to everyone that contributed!! You are all 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..... Angie Fick!!!! 
Yay Angie!! I'm super excited to make a special cake for you!!

Here's a video of the drawing...

Thanks again everyone for all your support!! We are SO BLESSED to have such an amazing network of friends and family to support Luella!!


Tuesday, June 23, 2015

$5 Challenge!!

Here a $5 CHALLENGE!! I'm challenging everyone who hasn't already donated to a cake 4 a cure to donate JUST $5. What's 5 bucks? ...but together those $5s CAN make a difference! Help me surpass the amount we raised last year! We need a CURE!!

You have until midnight!! Winner of the cake will be announced tomorrow! YAY! If you are too far away to win the cake you can STILL DONATE!! http://www.youcaring.com/acake4acure/

Donate online, drop it at my house, met us at Pizza Ranch (in Luverne) tonight at 6:00 (wear purple)... I'll be around to take your donations!! Thanks!! Checks can be made out to "Dravet Syndrome Foundation".

Do this for Luella.... OUR WARRIOR!!!

Monday, June 22, 2015

Last Chance for CAKE & A Father's Day Seizure & Wear Purple

Our - a cake 4 a cure - fundraiser is winding down!! You have until midnight tomorrow - Tuesday - June 23rd - to get your donations in and get a chance at winning a custom cake! Every $5 gets you an entry and every dollar will go to the Dravet Syndrome Foundation. Luella and so many others need a CURE!!

Submit your donation online here: http://www.youcaring.com/acake4acure/
Or give me a check made out to "Dravet Syndrome Foundation"

Father's Day Seizure

Jim had to give Luella a dose of midazolam (her seizure rescue med) yesterday on Father's Day. Not the best way to spend a special holiday. She had just fallen asleep for a nap and the seizure started. Those darn sleeping seizures are so tough to stop. They usually don't stop on their own. Thankfully it was just one dose and she slept it off and was better later. That actually makes three seizures this month - the other two were at a water park on a little trip we took earlier this month. Two seizures in one day there but that was a high-risk activity for her... just too much fun and excitement. :-(

That's why we do this... creating awareness, doing fundraisers... helping people understand that Dravet syndrome affects every aspect of Luella's life and our family. Money is the only thing standing between us and a cure. Please consider donating to our fundraiser. We would really appreciate the support and help in finding a CURE!

Please Wear Purple Tomorrow - June 23
Dravet Syndrome Awareness Day!! 

Wear your purple tomorrow to raise awareness for Dravet syndrome and show support for Luella! Send me your purple pictures!! 

Tuesday, June 16, 2015

Wear Purple on Tuesday June 23rd!!

Just a reminder to wear your purple next week on Tuesday, June 23rd for Dravet Syndrome Awareness Day!! Show your support for Luella and so many others battling Dravet Syndrome! Send me pictures (email or facebook) of you in purple to add to our Purple Video at the end of the year!!

If anyone asks you what Dravet syndrome is - the short answer is: it's a severe form of epilepsy. If they want more details here are some:
  • Seizures begin in the first year of life in an otherwise typically developing infant.
  • There is currently no cure.
  • Initial seizures are most often prolonged events (status epilepticus).
  • Individuals with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy).
  • Children with Dravet syndrome do not outgrow this condition.
  • Treatment options are extremely limited.
  • Dravet syndrome patients require constant care to assure their safety due to the unpredictability of seizures as well as their inability to recognize real danger.
  • Individuals with Dravet syndrome have associated co-morbid conditions that can include: 
    • Behavior issues and developmental delays 
    • Deficits in social and learning skills 
    • Movement and balance issues 
    • Growth and nutrition issues 
    • Sleeping difficulties 
    • Chronic upper respiratory infections 
    • Sensory integration disorders 
    • Disruptions of the autonomic nervous system (which regulates things such as body temperature, sweating, and toileting)

Thursday, June 11, 2015

Our story on KDLT!

KDLT News has been so good to us this week!! I got a call last week Friday asking if I could come to the studio EARLY Monday morning for a live interview about my "a cake 4 a cure" fundraiser! I was thrilled! What a great way to get some awareness for Dravet Syndrome and help us raise some money for the Dravet Syndrome Foundation! I was there around 6:00am for a spot at 6:30. If you missed that little clip you can watch it here - http://www.kdlt.com/kdltnews-news-kdlt-news-today/Have-Your-Cake-And-Help-A-Cause-Too/33458266 I was pretty nervous going into that interview but after talking to myself the whole way to Sioux Falls and praying before going in the door - I was completely at ease in the studio!! Thank you Lord! No tongue-twist ups!

After that visit Monday morning, Sarah Blakely (the morning anchor) asked if they could come to our house to meet Luella and extend the story. I got home by 7:15am on Monday and Sarah and her camera man arrived around 9:00. Sarah asked if Luella and I could possibly do a little baking for them and I quickly got things set up. It was SO FUN! Luella definitely is my little kitchen helper! She probably helps more in the kitchen than the other kids. Of course she loves to be my little tester too!

Teaser Video
Out of all the video they took I was anxious to see how it would all come together. On the KDLT News at 5:00 they did a short little teaser for what was to come at 6:00. They featured more of my cakes here. This wasn't posted online so I just took a quick video of what was on TV to share here:

Watch on YouTube here: https://youtu.be/NjEVy379c78

The WHOLE Story
At 6:00 the story was on and they did a great job putting it all together! Luella has really enjoyed seeing herself on TV so much this week. She had the biggest grin watching herself eat that cupcake at the end!! Here is what aired on the KDLT News at 6:00 (also re-aired this morning around 6:30) and the story they wrote online also (not the greatest quality, but you get the idea):
We kind of feel like celebrities this week!! :-) It was fun and we pray that we helped raise some awareness.

Don't Forget to get Your Tickets!!!
Only 12 days left to get your tickets to win a cake and help us find a cure! Please visit the donation site to make your donation - every $5 gets you one entry into the cake drawing! ALL the money will go to the Dravet Syndrome Foundation!! 


Wednesday, June 10, 2015

MORE News! Watch KDLT news tonight at 6pm

We've had a lot of cameras in our faces this week!! Stemming from my live appearance on KDLT on Monday morning... Sarah Blakely and her camera man spent some time with us at our house later also. The piece will be on KDLT news at 6pm tonight (Wednesday). I'll post the link to watch online once it is there too.

Here is what aired live on Monday morning if you missed it:

Tuesday, June 9, 2015

Medical Marijuana will be available soon

At 5 PM and 10 PM today KELOLAND news did an update on the status of medical marijuana which included a segment on Luella.  If you didn’t catch it live you can view the 5 PM clip online here:

To summarize the story (as it pertains to Luella) very briefly, starting in July we’ll have access to medical marijuana here in MN.  We are very grateful to soon have access to this treatment option that has worked so well for so many other kids with Dravet syndrome.  However, after much careful consideration we have decided not to utilize medical marijuana initially.  This may be a surprise to some after all the advocating we’ve done for medical marijuana access.

So why aren’t we using medical marijuana now?  The biggest reason is the improvement in seizure control we’ve already achieved.  For the past two years Luella was averaging a seizure per week.  Almost all of these seizures required her rescue med to stop and supplemental oxygen to keep her O2 up.  A seizure a week was too frequent for our comfort so we eagerly anticipated access to medical marijuana.

However, during these past two years we did not simply wait for medical marijuana to become available.  We continued to try and fail other AEDs (antiepileptic drugs) and AED doses.  At this point in our battle with Dravet the odds of any current AED helping control her seizures is slim, but not zero.  We continued to pray that we would find something to help her before medical marijuana was available.

We are happy to report that last Oct we did find something (Diamox) that has (so far) made a big improvement in Luella’s seizure control.  Her seizure frequency had decreased to one seizure per month on average.  Additionally since Oct all but two of her seizures have stopped on their own in under five minutes without a rescue med!  Seizures that self resolve are a lot easier on Luella and less stressful for us.  Her shortened seizures have also meant that we’re not needing to use supplemental oxygen to keep her O2 up during and after her seizures.

Could medical marijuana improve her seizure control even more?  Probably, but it’s not guaranteed.  There’s a cost to any treatment change.  The obvious cost is financial.  Since medical marijuana is not covered by insurance it means that it would create a significant financial burden for us to utilize it.  I don’t believe the cost would be insurmountable, but we live on a pretty tight budget as it is.

I’ll list just a couple non-obvious costs that come to mind.  What if we traveled out of state with medical marijuana?  Could a routine traffic stop get us into legal trouble if Luella’s medical marijuana was discovered (since it’s not legal everywhere yet)?  What if far from home and we drop/spill her medical marijuana (I’ve got four kids in total, so the odds of things getting broken in our house is actually fairly high :)?  Medical marijuana is not something you just drop into your local pharmacy and get.  The only place we could buy medical marijuana is MN, and even here we’d have to drive a couple hours to access it.

Obviously I’d do whatever it takes to save Luella’s life, or to give her a quality of life.  But how much additional improvement would we see with medical marijuana?  Would it cut her seizures down from one a month to one every two months, every three months or more?  There’s only one way to find out and that would be to try it and see.

The sad truth is that kids with Dravet syndrome seldom stay easy and constant for long.  How long will our Diamox honeymoon last?  Months?  Years?  Once again I don’t know.  The most likely scenario that is that sooner or later Luella’s seizures will get worse again (more frequent and/or longer in duration).  When that happens I am so grateful that we have legal access to medical marijuana right here in MN.

Sorry for the long winded post.  To sum it up, like any other parent we are doing the best we can for our child with the information and resources we have.  When we feel it’s in Luella’s best interest to utilize medical marijuana is when we will try it.

Thank you to all of you that helped in legalizing medical marijuana here.  Even though we don’t need it to save Luella’s life today, we know other families in MN that so desperately need access to this and need that access now.  Thank you on behalf of everyone that has waited so long for this promising treatment option.

KELOLAND News: Luella's Medical Marijuana Update Tonight at 5pm

KELOLAND news called this morning to get a quick update on Luella's access to medical marijuana. Medical marijuana will be accessible in Minnesota on July 1st. Given Luella's current state - she is doing much better than she was when we visited with KELOLAND last year - we will be holding off on trying medical marijuana for now. Watch KELOLAND tonight (Tuesday 7-9-15) at 5pm for the update!