Friday, September 30, 2011

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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Thursday, September 29, 2011

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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Monday, September 26, 2011

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!

Friday, September 23, 2011

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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Thursday, September 22, 2011

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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Tuesday, September 20, 2011

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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Sunday, September 18, 2011

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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