Night of Princess Magic

I'm going to regret this tomorrow! HA! -Quite the first-liner, right?! It's approaching 3AM, and aside from some sporadic Myoclonics, Destiny has been "seizure-free" tonight. It's always like this...she will have a bad, even atrocious few nights...nights when my lack of sleep almost feels excruciating, and then when the cycle ends, and she begins to have "good nights", mom can't sleep...Total creature of habit!...Also, I tend to be overcome with anticipation and gratitude for the upward turn...I think it must be hard to understand unless you've been there/here, as a parent or loved one of someone who fights for their life.

We have been on vacation, living in our Salt Lake City "apartment" since 12/18? Though, my eternal friend Lori managed to swipe us a free night in a suite one night earlier. So many things to write about, but I feel an urgent need to record some highlights from last night. Not even real highlights, but my personal reflections.

Now, wait! - first things first! - the drugs from Europe ARE still working. Stripentol and Clobazam = a treatment method, which far from a cure! Destiny has bad days and "atrocious" nights, but in perspective, compared to September and October, they are very decent ;-) but weird.

A bad night now looks like this: she'll sleep for 5-10minutes, have a 40-120second Tonic Clonic or Partial Complex seizure, followed my some myos, wake slightly, fall back asleep for 5-10minutes, have a 40-120second Tonic Clonic or Partial Complex seizure, followed my some myos. Rescue meds no longer touch these clusters. I may wake her up, try a mid-night Popsicle, but as soon as we get in bed to try again, we are right back where we began. Just gotta ride the night out. In my delirium, I fear Desty may never ever sleep again without seizing!

Okay, this post hasn't been about any Princess Magic at all yet!!!

So, to make an incredibly amazing and magical story short, these heroic, angelic, coolacious people threw a Grand Princess Ball for Destiny, in part to raise funds for her medication, but mostly to make her wish of being and meeting a princess come true!

Many thank you notes to come for this! It's a good thing we homeschool ;-)

The evening was filled with magic for Destiny, and magic for me - separately! The child was princess crazy, full of life and unrestrained energy as she would meet a princess, then quickly say with urgency, "I need to go find more princesses!!" To my astonishment, what began as 5-6 traditional Disney princesses, grew into gobs of mainly teen/young adult women in gorgeous gowns, who'd be introduced as "Princess _______". I swear they must've called their friends in to keep Destiny entertained!

Destiny LOVED the Queen dearly! My favorite quote: "Mama! The Queen has FIVE daughters! That's a LOT of surgeries!"

Pure Princess Destiny magic!

For me, the magic was the non-character guests...there are just a few that I will reflect on.

Ariell (that's really her name!) who I have known for 21 or 22 years. We met as twelve-year-olds and now our girls (and boys!) are growing up as cousins! This picture of Kysaija at 4 and Destiny at 6 so reminds me of the relationship that Ariell and I had at age 12! Kysaija is Ariell's mini-me - totally....

Ariell and K are literally one of about four "sides of our family". How lucky my kids are!! LOLOL! And how confused they will be! What grade do you do your family tree? Remind me to homeschool those years!!!

Then there's Eric and Addy who came, from the Cutler's "side of our family". I've known Eric for ~9 years, I believe. We have been at family dinners/parties etc., but haven't really spoken until tonight. I feel a special and unique bond with him and his wife, Barb. They have a little boy with uncontrolled seizures, and I frequently seek updates on him...so to my kids, our kids are cousins. It is heartbreaking to hear of their struggles, but a shared experience, when it naturally exists, is priceless. As we parted, there was a moment of, "Yes, yes, I do know what it's like..."

K, I don't know if I can convey anything of anything to make sense with this next reflection. To try to understand it, pause and read this dated post of mine: Visiting Diana. Diana passed away almost a year later, when I was laid up from my hip replacements. I guess you never get over losing such a special friend.

This reality that I am faced with concerning my Destiny's prognosis....there are two people I would give anything to look in their eyes and say "Help! Tell me what to do, think, feel. Tell me what my goal should be in mothering this babe." Diana and Laura are both gone. I swear they both would be able to console me, with their magic!

Anyways, Diana's kids, Spencer and Samara, and their new mama (who I truly adore and I'm soooo thankful for!!!) attended the Ball! I love this picture of Kysaija and Samara dancing with Benny!

Of course, the Galloway's side of our family was there - they helped put it on! I greatly missed Granny and Paz though!

I guess, for me it was a big reunion of people we love, plus many little princesses and their parents that we don't know, coming together to help my little girl (who shoved her cupcake in my face at the start of the Ball, squealing joyfully "Got'Cha!" ya, you better be glad I think you've seen it done at weddings, my Pretty! ;-).



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Location:Salt Lake City, Utah

Gnome and Deluxe Fairy Door Raffle for Destiny!

Raffle Tickets Sold Here!!!! Only $2.00 EACH!!





Young or old, all gnomes gneed to believe in miracles. It's just in their gnature to do so. Everygnome is destined for greatness, whether that be through great acheivements or small ones. Perhaps a gnome will one day save the entire garden, or perhaps their Destiny is to just remind their loved ones around them that life is good...

A special friend, Jennifer, of Gniffer's Gomes made this colorful gnome just for my Destiny. A friend of hers, (all the way across the world) in the UK, donated the totally radical Fairy Doorway to go with Destiny's Gnome.

Destiny is going to get this gnome for Christmas to watch over her.

Get your own custom gnome of your choosing from Gniffer's Gomes plus a Deluxe Fairy Door from Enchanted Doorways & Fairy Door Friends!!!

Buy Raffle Tickets by clicking the PayPal Button on the left column of this page and note "Raffle" when you donate! Each RAFFLE TICKET is $2.00. If you donate $10.00, your name will be entered into the raffle five times; if you donate $20.00, your name will be entered into the raffle ten times, and so on.

Destiny's Gnome Raffle ends on Saturday, December 3rd at 8PM (MST)!!!

Destiny will pull the winning name from a hat!!


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Make a Donation and Shop Simultaneously TODAY!

The Wings for Destiny Auction blasted off on October 30th! Two weeks into it, bids are totaling almost $600!!!

These past few weeks have been simply unreal...I lack the words and energy to describe it - that is why I have not blogged lately. I apologize to everyone who hasn't been updated on Destiny's progress lately. The meds are working!!! Whether they are going to work in eight months/a year/five years, I don't know, and I don't care right now...I can't care right now.

I look into my daughter's eyes and I see Destiny! Destiny's expressions...they just make my heart melt! I had to teach Benny and Desty that ”mommas cry when they're happy". (LOLOL!) I take mental pictures now, quite literally. I know what can happen...I feel so blessed in that way. I have the rare opportunity to, for country fans, Live Like I Am Dying. That's exactly what I'm doing, guys...No regrets!

Destiny is not seizure-free; her med cocktail is not a cure for Dravet Syndrome...I can't 'fix it' (DAMMIT, I say! ;-). But we can and are truly changing this child's life for the better! Seizures have decreased from 50-70 alarming seizures each day to only a handful per week. We were 'rescuing her' 3-10 times a day when her seizures were out of control. We have not given any type of rescue medication in over two weeks!!!

Desty is a fighter, and you and I are her sponsors!

Please take a few minute to look at the wonderful items that were generously donated for auction at Wings for Destiny Auction

This is such a cool way to raise the money for Destiny's treatment!

Anyone can bid! Just put your bid in a comment. Shipping is included. The auction ends on November 30th!!!

Please go today and start a Bidding War! ;-)

Challenge your friend's to bid as well!



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What Your Money Has Done

Thank you so very much for helping us bring our Destiny's spirit back!

We love you all!!

Please continue to contribute when you are able!


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Sometimes a Mom's Gotta Do What A Mom's Gotta Do

Sometimes a Mom's Gotta Do What A Mom's Gotta Do...Any Questions?

That 80's anti-drug fried egg comercial has been coming to mind lately...ugh...Desty's brain or my brain??...I'll leave that one alone!

Desty is officially OFF the Ketogenic Diet and OFF of a failed drug called Zonegran, titrating down a bit on Depakote, and is showing improvements as Stripentol and Clobazam begin to work together.

You probably have no idea what most of that means, nor should you. I hope you don't...




Destiny is doing much better - that's really all I care about. I pretty much went with my heart and (ulcered) gut to make most of these changes.

I have been losing my baby girl these past two months. Sometimes little by little, sometimes chunk by bloody chunk.

The Keto Diet gave us so much over the summer - I am forever grateful...

The Diet must be regularly tweaked and monitored very closely by a supportive and knowledgeable dietician. There truly was no support from ours. And when Destiny's condition spiraled downward, there was no support. She would not even be bothered to help me make Destiny's meals dairy-free or talk about how to ease her reflux.

I tried and tried to tell this dietician that eating meals triggered seizure clusters and tummy pain and reflux, but she insisted on communicating with me only at 3-month appointments, and then she would just look sadly and say "I don't know." I kid you not! She wouldn't tweak the ratio or advise me. I believe, with a real Keto team, the Diet would still benefit Destiny - as it did up until she got sick in September.

Originally, I wanted to do the Ketogenic Diet to get her off the meds. Now, at this point, being med-free is not realistic and all I really care about is giving her a little happiness, and bringing as much 'normalcy' into our little family as possible.

These past two weeks, Stripentol has given Destiny moments of extreme clarity and better seizure control. It's almost as if God is assuring me,

"Your Precious is still here, be patient, give these good meds time...this is a preview of what's to come."

So, on Thursday, Desty ditched/fell off/was gently pushed/leapt off the wagon and we all celebrated with lunch at Fridays (after she slept through her entire Keto appointment ;-) LOLOL!

I have the feeling Destiny's medications are working better without the ill-administrated diet. Seizures have improved a lot in the past week, but Destiny has been SEIZURE-FREE (at least noticeably!) for two nights in a row! Do you know how drastic that is?? Two weeks ago, 50+ seizures at night were the norm. Daytime: she still requires a nap in the morning, but any daytime seizures are very mild (the fact that I can consider any seizure of my child's 'mild' makes me want to cry...but it's true!)

She's engaging more and more; she is awake more. She is still regressed developmentally and behaviorally, but Desty's increasing moments of mental sharpness (peaking between 11PM and 1AM!!!) are priceless! And, of course, with sharpness comes natural Destiny sass! - it makes my heart sing!





Here's to Destiny Ann!



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Introducing...The Wings for Destiny Auction!

Thank you, friends and thank you God for continual strength and support! I'm scared and lonely only for a moment, and then magic happens...such as this very special auction on behalf of Destiny. My gratitude is immeasurable, truly, at this point, for Emily's goodness to us, and too, for all of the wonderful vendors who don't even know us!

Please check out Bright Eyes Designs and the auction items on Facebook....

Be the first to bid on October 30th, when the Wings for Destiny Auction opens!

From Emily: When I started Bright Eyes Designs, it was a way to get creative, cover the costs of my craftiness which I was just uncovering, and to have some fun with Social Networking. I have enjoyed finding my creative bone and teaching myself how to make new things. Most the time my family tells me that I have bitten off way more than I can chew-and there are days I believe them! At Bright Eyes Designs, I offer something for just about everyone, from handmade goodies for the little ones, to custom quilts, and Weight-loss/Healthy living products! Even if I don't have it, I know where to get it! Now that Bright Eyes Designs has grown, I find joy in doing what I can, when I can to give back. I know that my shop is not the biggest, or the most well known, but I enjoy spreading the word the best I can.
I don't personally know Destiny, or her family. I have no personal experience with Dravet Syndrome or what daily life is like with this condition. What I do know, is that I wanted to help. In whatever small way that I can, I want to help. I have known some of Destiny's 'extended family' almost my entire life. I have laughed, loved, and cried with them. When I was introduced to Destiny's situation via them, I knew I had to do something. Through them, I can get a glimpse of just what this diagnosis meant to them. Through them, I can see that this medication is so very needed. It is my hope that through this auction, we can raise enough money to help alleviate some of the financial burden from this vital medication. It is my hope that through this auction, we are able to further Destiny's reach in helping to raise awareness for this disease, and the medication needed to treat it.

I want to thank each and every one of the vendors who have donated their time, supplies, and finished products to this cause. Each of them are such amazing people. I know each of them and count them among the many blessings in my life. Please, if you have time, visit them and let them know how grateful you are for their kind and generous donations. The list of donations is constantly growing, so please check back often.

I have provided their links with the picture of their items donated in the auction, found at Wings for Destiny Auction.

Again, bidding begins October 30th!


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It Doesn't Take A Miracle...

It Desn't Take A Miracle to Make A Brand New Start..." Please watch this touching video...

Destiny is right there smack in the middle, doing her very best. This was the first song they practiced today in Lemonade!, and she did better than I have ever seen her do, right here. (Then she crashed hard but that's ok! - I have this video clip! ;-) Ok, I sobbed through this song today!

Let me give a brief description of Destiny past two days. On Sunday, she attended church with her girlfriend and had a seizure while there. Her neurologist calls this seizure type "obtundation status" - if you know what this means, please clue me in ;-), and apparently I have been grossly underreporting her seizures...for another time...

So, Sunday was a fairly horrible day for the most part.

Yesterday, however, Destiny was clearer than she has been since early September when she caught a cold and this downward spiral began! It was stunning - my heart was/is leaping for joy. Cognitively she seemed to have jumped 5 steps! Her personality was unleashed! This is Stripentol at work, my friends! Yesterday was day FOUR on STP, and this is the affect we all pray for!

She was glowing and full of life, and just a kid! Her genuine smile, eye contact, quick responses...All day long! She began her Reading Eggs curriculum , doing most of it independently, and took a magical bike ride...

She then went to Creative Arts and finished making this fabulous mask, and a very special bracelet for me. We all went to the grocery store last night...and, for once, it was so easy and totally enjoyable! I was wishing the day would never end. We danced in the dark parking lot on the way home!

And then, wouldn't ya know it...last night was a med titration night, so we had to adjust doses :-( ARG! She's been really lethargic and sluggish today (to be expected), EXCEPT for the first 20 minutes of her musical practice. In two more weeks, Desty's medications will hopefully be stable, and yesterday is just a forecast of the happy times to come!!!


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A Consistent Soul Believes in Destiny

A consistent soul believes in destiny, a capricious one in chance.

A quote from a Benjamin Disraeli

Recently I was asked if I named her Destiny because of this whole thing. I laugh every time I think about it! Destiny has always been my Destiny, even before she was conceived -- she was my Destiny. Her name bares absolutely no "Dravet significance". It's much deeper than that ;-)

Destiny has Dravet Syndrome...unbeknownst to me until six months ago! This Syndrome doesn't change Desty's past, but it does change her future...Why? Because having a cause for seizures, etc., means that we can treat her medical needs properly from here on out.

You and your friends, and everyone that knows about Destiny, sprinkles a little bit of magical fairy dust on her wings, with every thought, every prayer, every ounce of love, and finally, every donation to her medical fund.


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We Got Stripentol! Plus, A Video Thanks!

Yesterday we had the medication, Stripentol, overnighted! We received it this morning and Destiny received her first dose. It will take a few weeks for STP to be fully effective.

My heart is especially heavy today...I lack words right now...I'm sorry!
Please watch our video clip that we made for YOU...



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An Aunt's Plea

From Aunt Chantee



I have loved reading all of the stories on the blog about Destiny. When Tammy asked me to write about some of my favorite memories I thought it would be very simple, however it has not been, I think mostly because I feel like I shouldn't have to be doing this to raise awareness and funds for life-sustaining meds.


When you become an aunt, all you see is a future of spoiling the kid and teaching them lots of naughty stuff (which I still do). As the other stories have said Destiny is a special girl that will touch your life and heart, but I think many people would say the same about many other children, and Destiny is NOT other children. I have tried to think of a way to make my words help someone understand what a joy and true delight this little girl is. I give up! I have been lucky enough to know Destiny from day one, and even before that. I was shocked to find out Tammy was pregnant again just months after Benny was born, but secretly I was happy and hoping for a girl.

Before Destiny was even 1-year-old, her family moved from Utah to Colorado, which was very sad; Destiny and Benny were a part of my daily life. It has given me a reason to travel, and I find I can still sometimes spoil through the mail. I have made it out a few times each year, and they come to my house (to give their mom a break) a few times each year.

Destiny was here just last Christmas. We knew she was having seizures (only two major seizures while she was here - one at my mom's feet) but we didn't knowabout the Dravet Syndrome. She still seemed like a mostly normal functioning little girl. It wasn't until her visit this summer that it really started to sink in. Now I cringe as I log on to Facebook and read the updates. The texts I receive from Tammy have changed drastically from happy little update about the kids and what they are doing that day, to updates about Destiny's condition. I feel helpless here on the other side of the mountain.

PLEASE take time to read ALL of our stories and PLEASE pass them on. Please help and pass this on to everyone you know. The goal is to raise money for Destiny's medication but the least we can do is raise awareness. PLEASE understand that these meds mean a slowing of the multiple daily seizures and a slowing of Destiny's regression after the seizures. Try to think about this from a family's perspective, how it effects their daily lives, and thank God your only reading this blog and not living it.

Now for a Destiny story.



This June I had a daughter named Sophie. When Destiny came to visit it was like she had a real life doll. She wanted to hold her and carry her all around. When the baby was sleeping Destiny would sneak into the room to check on her many times always being very quiet. I think the highlight for Destiny was getting to give Sophie a bath in the sink. Destiny was so excited and kinda sang a little song while scrubbing the baby. Now, Sophie cried the whole time which is odd for her - she loves bath time, but it was worth it to see how happy Destiny was with her real life dolly. She even helped lotion and put a new diaper on the baby, being so gentle the whole time. I cherish the pictures we have of the two little ladies together and I feel grateful that my child has such a special cousin.



NOW let me just finish by telling you what I want! I want Destiny to be able to grow up and babysit her cousin and teach her all of her little songs and dances and even how to be a little naughty sometimes! Destiny has so much to offer. PLEASE help us get the medication here ASAP! We are asking for this help because WE NEED IT! Thank you for taking some time to read this, making a donation and passing on the many others that may be able to help!



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Please Help Now!

After over 50 seizures last night, I purchased Destiny's Stipentol capsules today - they are being overnighted. Desty took a 2 hour nap this morning and had over 30 small seizures. I couldn't have purchased this medication if not for so many of you! Thank you, friends, for making this purchase possible!

Apparently, if she hadn't already started Clobazan (the lesser drug), three weeks ago, I might have been typing this from PICU. Please pray!! Hopefully, the Stripentol is desty's "miracle", like it is for many kiddos.

Please consider donating or donating again now!

With Love,
Tammy, Benny, Destiny and Tank, the Wonder Dog


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A Poem For Dravet Angels All Over

A fellow Dravet Mom just posted this beautiful, powerful poem today, and it took me by surprise how personally relevant it is to me... A sadness is woven throughout, but so is the joy of life.

This may surprise you, but I'm very aware that I 'suffer' from Dravet more than Destiny does. I'm a very weak person when it comes to my kids and medical things. It became apparent to me that my reaction and sadness was more a burden on Desty than the actually seizures when the first thing she'd say was "I'm ok, Mama! I'm ok!" There, I say, is my Angel!

It's taken me a long time to get to a place where, during a seizure I take on Emergency Management role, and I'm really able to smile as she opens her eyes and be happy everything is OK! And meet her where she is. (It took a complete perspective change. I must pat myself on the back...I'm pretty good at this now, and my "postictal happiness" is 110% genuine - this is, in fact, happening as I type this very post and she wakes repeatedly from brief but annoying seizures.)

Regardless of your spiritual belief, I hope you will be carried away by these truthful words, and see the emotional side of our lives with uncontrolled seizures and everything that comes with it.

Darkness Imparts – We Drift Away

Come take a walk with me and Hay. We’d like to introduce you to Dravet. Come meet Hay’s friends, hear their hearts. Then hold on tight as darkness imparts.

From Hay Hay:
My friends are many, of every type. Dravet cares not of age or might. One day we’re at school, happy and free…suddenly we wake up – what happened to me?! Our moms and dads look scared and sad. There are tubes and wires all over and in us. Doctors, nurses, and words we cannot understand. What does it mean to be in status?

Darkness imparts, we drift away.

We feel icky inside, even outside too. We just want to play and run like you. More pills to take now, our tummies ache. Uh oh! I can feel my body starting to shake.

Darkness imparts, we drift away.

Slowly returning – that one wasn’t too bad. We smile so YOU know we’re ok. Wish these tubes were out of me now. I want to get up, go outside and play.

We hear the doctors say Dravet a lot. Our parents talk about it too. I guess that’s what we must have? I guess that’s why we can’t play like you? Before we take another pill, or another needle they shove inside. There is something you all should know - especially you always there by our side.

Darkness imparts, we drift away.

I’m back again so please hear what I say, before darkness imparts and I again drift away.

I love every minute I get to laugh and play. I live as God intended each day to be. I take for granted not one single thing. Only angels can really do these things. Our physical bodies are different for sure. But our spirits are different too. We chose the families we did by design. They care for our bodies so our spirits can fly.

On the days we can, we play and laugh. The many days we cannot, it’s ok. We came here to help all of you - it has always been this way. We chose this life before we arrived, the hardships well understood. To our moms and dads, we love you most. We picked you because you are good.

We know it looks like we suffer, we know you wish better things. It makes us sad to see you cry, watch you worry day after endless day. That is why we tell you now, why we pray you hear what we say.

It takes an angel to care for one and only angels have Dravet.

Darkness imparts, we drift away. We’ll be back soon…
Until you see us smile again, love to you all from Hay Hay.

For Hailey and all her Dravet brothers and sisters.
Alexa (Hay Hay’s Mom)


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Julie and Lowell love Destiny!

Divas - Julie and Destiny




Lowell stealing a smootch!





We have been blessed to have Destiny in our lives. We have known Desty since she was a little baby and she has brought us so much fun and joy to our lives. Destiny is beautiful in so many ways, she is loving, giving and has a gentle spirit, and is full of creativity and has a great imagination.

Desty's imagination has taken her to new worlds and she is quick to take others with her.
She has swam through the lake that has alligators, has made pine leave spaghetti, fished in the imaginary pond and made roasted imaginary marshmallows with a stick over the imaginary fire. She has swam w/alligators in an imaginary lake, had flying contests with fairies, hidden from dinosaurs, and run from monsters. We feel privileged to be able enjoy many experiences with her. The photos shown here can attest to that. She is truly a child near and dear to our hearts. Desty has enriched our lives immensely. She is a kind, loving little person who enjoys all kinds of activities. She is funny and is always up of adventure. We love Desty and look forward to sharing many more adventures with her. If you can, please give to fund these expensive drugs to help Desty survive and thrive!!






With our love,
Julie and Lowell


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Our Angel, from Robin's Eyes (and Heart!)

I first met Destiny at our mutual friends Laura Hershey and Robin Stephens’ home in the summer of 2009. We were celebrating their new daughter’s arrival. As I walked in the room, I immediately saw this very little, charming girl sitting on her momma’s lap. She reminded me of the paintings of angels that my mother hung over my bed when I was a little child. We didn’t get much time to talk to each other, but there was an instant connection. A few months later, my little boy unexpectedly passed away. I felt that my life had lost all meaning.

Through a series of events, Destiny’s mother, Tammy and I had the opportunity to became close friends. Tammy asked if I could care for Destiny a few days a week while she was working. I was so happy to have this little girl with her sweet face framed in soft curls in my life. Destiny, our angel, brightened up our home with her laughter and chatter. I would take her to visit my mother who had dementia. She would play with my mother’s Precious Moments figurines – making them talk to each other – and my mom would smile and laugh like I hadn’t seen her do in a very long time. That winter and spring were filled with Destiny’s happiness – which was so contagious that it made us happy too. In the summer of 2010, Destiny and her brother Benny were able to take advantage of the camp scholarship fund created in our son Brady’s name. Destiny said to me “it was so nice of Brady to pay for camp for me and he didn’t even know me!” When my mother passed, she assured me that “Meme” was in heaven with Brady waiting for me. How can you not believe an angel?

It was about that time that Destiny started to have seizures. At first, we would see her stare for a few seconds. She would be playing with her doll house chattering away, and then we would hear a few moments of silence. One evening, we got a phone call that Destiny was in the emergency room as she had a seizure. With our friends Julie and Lowell, we took turns visiting her room and watching Benny. The seizures became more frequent, and we were called to the emergency room more and more often. I will never forget Destiny’s first seizure at our home. She went to go to the bathroom while we were watching a movie together. She didn’t return for a few moments so I went to check on her.
She was in the hallway, lying on the floor. I picked her up and she started crying – only it didn’t sound like a child crying – it was like a cat crying. She was unresponsive and the crying continued. I rocked her in my rocking chair as I called Tammy. My son drove us to the emergency room. By the time we got to the emergency room, she was sleeping. When she saw her momma, she climbed into her lap and cuddled in.

Because of the frequency and intensity of the seizures have increased, Tammy is no longer able to work. I no longer watch Destiny during the day. Destiny has been diagnosed with Dravets Syndrome. I visit her and some days I am greeted with a bounce into my arms and a big hug. On other days, I am dismayed by her demeanor. She is very tired and can only give me a bit of a smile. Tammy’s “job” now is to make sure that Destiny stays on her special diet – a diet that has reduced her seizures – and to provide 24/7 line-of-sight supervision. There is a medication that has been approved in Europe for this extremely rare condition. Studies have shown that this medication can help Destiny. We are waiting for approval from Colorado Medicaid for payment of this medication. It will take several months. In the meantime, we are asking folks to help Destiny’s family pay for this medication. Destiny has helped me to heal from the greatest loss a parent can suffer. Now I want to help provide her with the medication that can help to heal her. It is the least that I can do for this little angel.
Note: Robin is one of our closest family friends. Her entire family has included us into their family seamlessly. It was only today I discovered we don't seem to have any pictures of these two together. It's really hard to believe being the amount of time they have spent together!...We'll change this soon! Until then, some of Robin's favorite pictures are included above.

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Friday's Goal

On Friday, my personal goal was $700; we hit $1,150! Thank you, my friends!! Thank you! That means we have raised enough for Destiny's first month on Stripentol and Clobazam! This is a huge relief to me, a huge relief!

But we must keep our mind on the prize, and raise 4 months worth of funds! Can get hit the halfway mark by this Friday?? That's what I'm shooting for! If you have already given, please feel our hugs and refrain from hitting the "Give Button" again! We feel your love and support; and we may need you towards the end of this event... If you haven't yet donated, there's no better time than now!...(I want this fundraiser to be over soon! ;-). $5/$10 from every one of my blog readers who can afford it, and then just sharing this fundraiser and desty's website with your friends and businesses, encouraging them to support Destiny's Wings, will make the difference!

A Princess Tale, from Lori

I’ve met few princesses in my life. Destiny Ann Burton is one of them. I visited her family once when she three. As we cut through a small park near her home, she twirled her slight frame again and again, delighting in the flair of her pink ruffled skirt. She talked to the flowers and the wind finding them a more adequate audience for her tales than the grown ups she was with. But the snatches of these stories we heard astounded us with their complexity. Destiny’s fanciful universe became a serious study of science and ethics as she wove plot and action together.

Later, I saw Destiny apply these lessons as she demanded fair treatment for herself when her space was invaded by her older brother. She also made sure an outsider (myself) was welcomed and attended to. She made sure I had sustenance (cookies) and warmth (a blanket). She provided me with good company and amusement by playing troubadour and court acrobat as she performed amazing feats on the top of her swing set. And these lessons were further applied as her smile faded and her eyes smoldered when she perceived her mother the recipient of unfair treatment.

Now at age five, Destiny struggles to hang on to her grace and agility.
This little princess struggles to tell her stories and she struggles to remember her lessons as a rare genetic mutation called Dravet Syndrome, characterized by uncontrollable seizures, attacks her brain.

Please help this Princess get the medication that she needs so that her Fairy Tale continues in health and happiness!

With Love and Fairy Dust, Lori

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Destiny and Dravet Syndrome

This site is dedicated to our Destiny - the love of our lives and the joy in our hearts. Destiny is an innately happy, loving, infectiously jolly little girl who happens to be struggling with a rare seizure disorder, called Dravet Syndrome. Destiny was born with a SCN1A mutation. The SCN1A gene contains instructions for the creation of proteins that regulate the function of sodium ion channels within the brain. This mutation of the gene causes Destiny's seizures.

Destiny has had this syndrome all of her life, but it wasn't until recently that it began truly impacting her health and her daily life. Unlike Classical Dravet cases, Destiny had mild clinical symptoms until she was four years old. She is considered to be on the Dravet Spectrum, but as of last week, we were 'assured' Destiny genetically and clinically has Dravet Syndrome. Basically, even though her younger years were impacted minimally compared to infants and tots with Classic Dravet Syndrome, she has clinically met the mark for "Dravet Alarm" and there's no longer room to deny it, and we must accept and act now.

You see, Dravet Syndrome has only relatively recently been identified as a distinct syndrome, and they are learning more and more about the SCN1A gene and it's mutation effects all the time.Now research confirms that if the genetic abnormality is present, and there are mild clinical symptoms in a child's early years, that that said child will likely reach a point where the symptoms become rampant. There are so many people with intractable epilepsy who have this syndrome but have not had the proper genetic test which would diagnose them. Fortunately, that is slowly changing. It's estimated that one baby with this genetic abnormality is born in the United States every single day.

Dravet Syndrome may be considered 'rare' today, but I have a feeling that will not be the case in coming years, when this SCN1A genetic test is standard for children and youth with difficult to control epilepsy.

There is no cure for Dravet Syndrome and Destiny will never out-grow her seizures.

Dravet Syndrome was first described by French physician, Dr. Charlotte Dravet in 1978. Children with Dravet experience almost every type of seizure known. The first seizure usually occurs in an otherwise normal, healthy infant before one year of age and is usually associated with fever. Seizures then occur without fever, eventually becoming frequent and resistant to treatment. They also tend to be prolonged, lasting more than 5 minutes. Prolonged seizures may lead to status epilepticus, a medical emergency. Status epilepticus is defined as a seizure that lasts more than 30 minutes, or seizures that occur in clusters, one after another.

Children with Dravet Syndrome are likely to develop other complications. Developmental delays may or may not include regression or loss of developmentally attained skills. Children may be delayed or impaired in speech, exhibit autistic- like behaviors, or lose their ability to control movement (ataxia). Children may have difficulty sleeping, be prone to infection, or become sensitive to temperatures, visual patterns, and environmental lighting. The degree to severity of these delays has a direct correlation to the intensity and frequency of seizures. Children with Dravet generally have shorter lifespans.

To date (9/21/11), this sweet child of mine has five seizure types that we know of -Tonic Clonic, Complex Partial, Atypical Absence, Absence and Myoclonic, all of these complimented by clusters. Over the summer, and until a recent common cold, Destiny's seizures were controlled during the day with medication and the Ketogenic Diet. (Nights were still a bit rough). A three day cold spun Destiny's seizures out of control, introducing Partial Complex Seizures as well as Atypical Absence Seizures to the mix, and many very scary status seizures. Complications have been exasterbated, especially relating to developmental regression hit hard...and may be most difficult, for me, as a mother to see. These hard times didn't go away with or weeks after Destiny's illness.

Destiny's Neurologist is confident that Destiny needs to start on the only Dravet-specific drugs available, Clobazam and Stripentol (STP). Neither are FDA approved, but have been successful in treating Dravet patients in the European Union for years. They are both available in the US as "orphan drugs". People with rare, life-threatening diseases can import medications that are not approved by the FDA into the U.S. on a compassionate use basis.

Even though Clobazam and STP are not FDA-approved (because the research and process for approval is extremely expensive and intensive), many states have found ways to purchase them for children on Medicaid, due in large to massive amounts of advocacy and persistence of parents in those states. I will post a list of states that pay for the necessary drugs as soon as possible. I think you will be surprised at how many states are already on top of it - I am! (It sucks that if we lived in Utah, where Destiny and Benny were born, that I wouldn't be able to get the personal assistance that I need to survive and parent my children, but my daughter would receive the life-saving medication that she so desperately needs.)

Again, Colorado Medicaid has agreed to pay for Clobazam and STP, but they are stuck on creating a process to do so. As with most things like this, Colorado is sure they can find a better way to purchase the drugs and refuse to follow what other states have done, leaving kids like Destiny to deteriorate or placing the hefty financial burden on their families.


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Money is Coming In! Please keep it coming!

We have raised $574 on PayPal, and checks are expected to start arriving at the Foundation any day now! I see Destiny's fundraising link on so many of my friends Facebook pages, and I want to hug each and every one of you for caring (and lighting the massive weight on my shoulders!

This is really happening, thanks to so many of you and you friends!

This morning we ordered the first and least expensive of the two necessary drugs, Clobazam, and it will arrive by next Monday afternoon. Since beginning the samples of Clobazam on Friday, seizures have decreased at least by half, and Desty has been super happy and spunky!

We are off to a great start!! I am truly awed by the generosity and compassion coming our way!

Destiny is scheduled to begin the main Dravet-specific drug, Stripentol, in a couple of weeks. Please help us push to have the money to make this transaction!

Please remember you can also make tax-deductible donations payable to Samaritan Foundation and mail to
The Samaritan Foundation
35 Redwood Road
North Salt Lake City, Ut 84054

This is a lot of money all together, but if just 40 people donated $20/month...the goal can be reached! Please spread the word!!


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A Mee-Maw's Pumpkin Tale

As the weather begins to turn cooler and the nip of fall is in the air, I am reminded of a special day last fall. In October, my daughter, Chantee, and I were able to go to Colorado to see two of our favorite kiddos. We had a wonderful visit, but one day was a stand out - it was a good day. On our way to see Tammy and the kids, we passed a huge field of pumpkins. It was a pumpkin patch open to the public and you could walk the patch and choose the perfect pumpkin. We had lots of plans and fun things to do with the kids each day but we were saving a special day for a trip to the pumpkin patch.

The morning finely came to go pick our pumpkins, the biggest most perfect ones we could find. We loaded in the car and set out as we drew nearer to the entrance the traffic began to build and the police had set up traffic control with their flashing light they direct each car to the entrance. All at once Destiny ducks her head and covered her eyes, I asked her why she was doing that? and her answer to me took me by surprise, "so I don't have a seizure me-maw", and she did not it, was a good day.
We drove for what seemed like forever till we found the perfect spot. We all got out and everyone had a different idea of what direction to start off. Ben (AKA Benny), Desty's big brother, found the biggest pumpkin he could lift right away, and then another and then another... well you get the idea.

As I watched Destiny looking for the perfect pumpkin she was drawn to the tiny ones, the green ones, in her words the ones no one else wanted. So with her really tiny green perfect pumpkin in hand, we set out to look for a friend for that pumpkin. Mind you, the patch is filled with large and round pumpkins but Destiny found her tiny green pumpkin's friend. It was oddly shaped, a pale yellowish color, extra dirt and wort's all over it.

This was Destiny's perfect pumpkin.
We laughed and ran and played all the way back to the car, it was a good day. We paid for the pumpkins, and Destiny was right no one would want that tiny green pumpkin and it was on the house, no charge. When it was time to leave we were directed to exit at the other end of the farm so we set off down a long dirt road, that wound back and forth making it twice as long to get out as it did to get in. But lucky for us, Destiny had been practicing for a musical about a circus. With her tiny voice, she sang her song about the circus and the lions. Her voice was clear and she knew each word to the whole song. It was a good day.
All my love to the moon and back, Me-maw


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A Picture's Worth

I am having trouble finding the strength to type anything of real substance yet. I never imagined being in a position that necessitated fighting for this child's life, and in fact, literally saving her life so often.

I don't know when I'll be able to really speak out on here - maybe this site is destined to be many brief thoughts, updates and dedications...only time will tell...

Tonight I found a picture, taken on Mother's Day 2008 of Desty and I on the "Mommy Swing". She was two and a half, and just as cute as can be!


She had had a couple of febrile Tonic Clonics by this time, and it's assumed she had countless infantile spasms, but the doctors assured us not to worry, she'd grow out of everything, and as far her staring, clumsiness and trouble chewing/choking - she was just flakey! - in her own fantasy world. (She is, it's true, but we now know this is how she adapted or compensated, even as a tot!)

Destiny's story is a story of what happens when a child "grows INTO it".

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Stregthen Destiny's Wings (How To Help!)

Donating via PayPal is a fast and easy way to donate!

But please remember you can also make tax-deductible donations payable to Samaritan Foundation and mail them to:

The Samaritan Foundation
2940 S. 300 W. Unit D
SLC, Utah 84115

If you can't make a financial contribution, the very best way to help my little Destiny is by sharing her story and need with all of your family and friends. This is a lot of money all together, but if just 40 people donated $20/month...the goal can be reached!

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A Word From Buck

I asked a few close Loved Ones to contribute the initial posts of this blog for Sweet Destiny, as I am to Broken and Emotionally Exhausted to start it. Thank you, for what you endure daily, Buck. Thank you...


Truly blessed to have Destiny in my life. I have never met anyone who brings more joy to everyone she meets. The first thing she says to another child is "Do you want to play?" the second is "Will you be my friend?" Even on bad days this is what she says. A trait that is in her mother too, even when she feels bad, she laughs and hugs a lot. With the medication and the many storms Destiny's tiny brain endures daily, her spirit endures. I pray the meds that all doctors recommend for Dravet Syndrome are approved by Colorado soon and I thank everyone who make it possible for Destiny to get the meds she needs now.

She is a joy to be around even on her bad days, thank you for helping her have more good days so she can enjoy life, learn and grow as much as possible. Now I sit with her while she is crying for her lost replacement bunny blanket and rainbow bunny. Tears and clogged nose. So cute, so sincere in her distress. Soon she will be asleep. The doctor gave Tammy samples of one of the new drugs until we can buy more. It is already helping her. A dramatic change in two days. Amazing.

I held the tissue for her to blow her nose and now she is sleeping with her cheek against my side. A warm spot in my life. A relief she can sleep better at nite.
Fewer seizures and longer uninterrupted sleep. I can't wait to see what the combination of the two new drugs will do for her, give her wings back and blow away the clouds in her brain. Clear blue sky, a slight breeze to help her along, perfect flying weather. I pray.

Buck, "The God Father"

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