2009 Christmas Blog

T’was weeks before Christmas

And all through the town

The snow was blowing in circles

Up streets and down!

The kids were all trapped

In the house with their Mom

Where she pulled out her hair

And prayed for the storm to be done!

She gave them all jobs

They would moan and complain

They’d rather do homework

Than shovel again!

The storm will be over

Soon, it is said

But will be replaced

By cold temps instead!

Despite winter weather

The family’s been well

Having enjoyed the past months

All feeling swell!

Dawsyn’s been healthy

As healthy can be

Only a handful of seizures

Every week. Yippee!

We do lots of running

Back and forth to the city

For appointments and treatments

Not for shopping … a pity!

Her new love this year

Is a Bay horse named Sunny

Therapeutic riding makes

Her smile so wide, it is funny!

In April next year,

We’re getting Dawsyn a dog

To help her to cope

He’ll tether, he’ll track

And warn of seizures, we hope.

Matthew has grown

From a boy to a man

At least that’s what it seems

As he looks down on his Mam!

Grade 7 is keeping

Him on his toes

But he’s growing so fast

We can’t keep him in clothes!

Youth Group is fun

But he ALWAYS needs money

For this trip or that

Or to spend on his Honey!

His musical talent is great

The piano still playing

And maybe guitar

For lessons we’re paying.

For Ben, work has been stressful

UFA has undergone a reduction

He’s now Engineering

Instead of Construction

He now drives to Calgary

Instead of Red Deer

It takes him much longer

That much is clear!

His camera’s been snapping

At this scene and that

We want to start framing

Or at least learn to matte.

In summer he golfs

And so does his wife

But seldom together

That’s best for long life!

Marvel continues to study

And share what she’s learned

With ladies who also like

To spend time in the Word

Marv, well she’s been busy

As busy can be

What she’s been doing

We’d all like to see!

Although she works

From light until dark

She may as well be spending

Her time in the park.

Nothing gets done

A house in distress

‘Til Nana comes over

And takes care of the mess!

As you have just read

It has been a good year

We are ending it off by

Sending good cheer

To you our good friends

And family all dear

Merry Christmas to you

And a Happy New Year!

Love from,

Ben, Marvel,

Matthew & Dawsyn

The Date is Set

I just got an email from 4 Paws for Ability and our dates for training have been set! The are April 27 to May 7. Dawsyn will have to miss nine days of school but I am sure it will be very very worth it! Now I can start shopping for seat sales!

New Banner

I must give credit where credit is due! My beautiful new banner was designed by my very talented second cousin, May-B. Apparently, with a wedding in two weeks, a very busy career and moving to a new home, May-B had too much time on her hands! Lucky for me, she decided to use said time to help her techno-inept cousin fancy up her blog. Thank you!!

Long-overdue Update

I had a very long post written and LOST IT! Maybe that is why I wait for months between posts, I’m just not that good at it!! I will begin again and try to remember everything I had written.

It’s been a busy summer. As I have posted, the June 12 fundraiser was a great success. I’m afraid however that I was a little like a bride on her wedding day … I had a great time but remember virtually nothing! I think I was in a total daze all evening. I obviously had no idea of how exhausted and run down I had become during the preparation but it all hit me in the week or two following! I could easily have slept for a week but the kids still had school and life continue on and I with it!

The kids finished up the school year and summer officially began. We had a busy fun summer. One weekend in early July was spent camping in Red Deer so that Matt and I could attend the Canadian Gospel Music Celebration with my parents. That’s always the highlight of the summer for me! For the last two weeks of July we pulled the trailer down to Southern Alberta.

We camped at Beauvais Lake for 10 days. Didsbury friends joined us for the first few days and we had a good time showing them our “old stomping grounds”. We took them to the Great Canadian Barn Dance, Waterton and Thunder in the Valley, a fireworks show in the Crowsnest Pass. Later in the week my friend Shelley came from her Waterton campsite to spend the day with us. She’s a wonderful wildlife photographer and we enjoyed taking her out in the fishing boat to photograph the birds at the far end of the lake. Another afternoon, our friends Stan and Lois from Lethbridge came out to do some fishing and have a BBQ.

For the last week of July, we moved the trailer to Lundreck Falls where Ben spent the last week of holidays while Matt attended camp at Southern Alberta Bible Camp and Dawsyn and I hung out with friends in Lethbridge. It was so good to spend time with my Aunties Irene and Ruth and with friends Glenda, Lois, Carolyn, Shelley and Pam. There were many more that I missed. There is just never quite enough time!

Camp ended the evening of July 30 and we returned to Didsbury to meet my sister, Shauna, and two of her children who had come for a short visit. We returned the favor a couple of weeks later when the kids and I drove to her place in Grenfell, SK, for a week on the farm.

When we weren’t on the road, we stayed very busy at home. Dawsyn worked hard on all her skills, physical and academic, with Emily. We are so fortunate to have Emily working with Dawsyn for the past two summers. She’s been such a blessing, not only to Dawsyn, but to the whole family. I would quite like to adopt her but her own family will have none of it!! Besides, she’s 18 years old now and off to college. Although she’s only in Red Deer, I will miss her very much.

School started on September 3 and the kids were very happy to go back … not as happy as their mother, but happy nonetheless! Matt is in Grade 7 this year and has officially moved to the high school. I can hardly believe it! He is bemoaning the loss of recesses but thinks he will enjoy the high school experience. I think he may be surprised at how much harder he has to work to keep his grades up.

Dawsyn is in Grade 3 and has a very good teacher. She also has the same two Educational Aides as she did last year. They have a good system in place and she learns well under their direction. We are very pleased with the progress she made over the last term of school and over the summer. Although there is a long road ahead, we keep working towards catching up to her peers in social behavior and academics.

There has not been a lot of news on the dog front. We submitted our monies and know that the dog is in training. We have to complete a video introducing our family and showing some of Dawsyn’s behaviors that the dog will have to be prepared for. Unfortunately, it is difficult to catch those moments on video because we’re too busy DEALING with them! However, we are slowly capturing what needs to be conveyed. Ben is working on editing the clips together and we will mail it to 4 Paws by the end of this month. We also have to send them an unwashed article of Dawsyn’s clothing so that the dog can learn her scent and be trained to track her when she runs away. We certainly could have used that skill a few times this summer!

We have been scheduled into the April/May training class. We will travel to Xenia, Ohio, for two weeks of training prior to bringing our new member of the family home. April still seems a long way away but I think the time will fly. We can hardly wait!

At http://www.4pawsdogs.org/in_training.htm you can see some of the dogs currently in training. We think that one of the Standard Poodles or poodle crosses is probably our dog! We particularly like Knobby, Frodo and Murdock. Guess we'll find out soon enough!

As Done as Dinner!

Dawsyn's fund raiser dinner was a huge success! It was attended by well over 300 people with over 150 donated auction items, 20 items in the live auction and 130 in the silent auction. Thanks to all tonight. My feet are tired and my brain is exhausted, but Matthew was thrilled when his best friend from Lethbridge surprised him as well as our 3 friends from Lethbridge came to support us. More to follow later when my brain isn't quite so foggy. Love to you all and thanks once again. PS we don't have the final total yet but it is over $19,000. tonight. This will be used for the dog and travel to the training sessions. Final figures will follow later. Goodnight to all and God Bless.

A "RELATIVELY" GOOD TIME!

What a fun weekend we've had! On Friday afternoon my Mom and Dad and my Dad's two youngest brothers and their wives arrived for a busy, fun weekend. We enjoyed supper and an evening of visiting over coffee and cake.

On Saturday we left Matt and Dawsyn at home with Ben and the rest of us travelled to Calgary to Dad's cousin's home for a gathering of McAmmond cousins. Two of my Grandfather's four remaining sisters were there, Auntie Jean and Auntie Margaret. What fun those two are!! It quite plain to see that I carry the same sense of humor gene and I can only hope that I have also inherited their longevity! The younger of the two, Auntie Margaret, will be 91 this year and is as clear headed (possibly MORE clear headed) than I am now. It was such fun to see her and my Dad teasing one another.

It was great afternoon of coffee drinking, singing, looking at photographs and visiting with many of my Dad's cousins from near and far. Family connections are too important to leave to chance. These opportunities to get together and share our lives need to be cherished!

Almost There!

All of a sudden, it's almost time for our fund raising dinner and auction. We've been feeling very on top of things, everything getting done when it should be, but all of a sudden all of the last minute jobs are totally overwhelming! Thank goodness for my personal assistant and right-hand friend, Zoe!! She keeps me organized and on-task and is working diligently to keep me sane ... should have her on board YEARS ago!! Although, failing miserably at the last task, she's doing a great job of making sure that I am where I need to be and doing what needs to be done at the right time. She refused to let me cancel a dental appointment on Monday ... she knew it would probably be the only hour I'd be able to sit still all week.

We are so excited about the auction. This community (and our broader "community" of friends and family) have been remarkable. We have everything from original art-work to hand-made quilts to exotic jewellery to golf packages to NHL memorabilia to bird houses. The list goes on and on!

If you are able, please come on out to Zion Church at 5:30 Friday, June 12. We'd love to see you!

A Bright Spot

In my dreary depressing day yesterday, there was a lovely bright spot.  Her name is Joanne.

Joanne is an Alberta artist and heard about Dawsyn through a mutual friend's blog.  She found a link to my blog through Cynthia's blog and then linked us to her virtual world on her blog!  I LOVE technology!!

Joanne contact me and offered one of her original paintings for our live auction.  It's a beautiful watercolor called "Fiesta Pears".   I'm so excited for you all to see it for yourselves ... but I'm a techno-idiot so can't post a picture here.

Joanne drove into Calgary to meet me at Alberta Children's Hospital yesterday afternoon to deliver this picture.   She is every bit as lovely as the pictures she paint!  After a harrowing couple of hours with Dawsyn, her brief visit encouraged my spirit and truly brightened my day!  Thank you, Joanne!!

Please visit her website at www.joannegiesbrecht.com or her blog at www.thistledown-arts.blogspot.com.  While you're doing that, I may just call Cynthia for a blogspot tutorial!!

A DAY IN THE LIFE

Yesterday was Dawsyn's monthly IVIG (Intravenous Immunoglobulin) Treatment.  We sent Matthew off to school and headed off to Alberta Children's Hospital for the day.  Last month the treatment went really smoothly ... get the IV set up, watch some Dora the Explorer, have some lunch and a little nap, watch a more Dora and go home.  We had convinced the doctor to let us try the treatment without benadryl to prevent an allergic reaction.  She did great!!  That's what we hoped for again.

All started well.  Dawsyn was in a great mood and bossy as usual.  She advised the nurses on how to do their jobs ... after all, she's been getting IV's for 8 years now, she knows the routine!  "Squeeze my arm with that thingy, use this vein here, it's looking particularly juicy today, wrap it all up tight incase I decide to take it all out myself before the treatment's over!"  Routine!

Unfortunately, after about 1 1/2 hours of watching DVD's, playing Go Fish and being all together pleasant, Dawsyn started to cough.  I told the nurses not to worry, she is often phlemy ... it's not an allergic reaction THIS time.  Then the wheezing started and the gig was up!  The dreaded benadryl was drawn up and injected through the IV site and within 30 seconds all H - E - double hockey sticks had broken loose!

The screaming, the kicking, the hitting, the biting and the fighting.  She wants to be held and comforted but is hyper-sensitive so it doesn't feel good to be touched.  Hold me ... don't touch me ... hold me ... don't touch me ... and all the while screaming as if she's on fire and there is nothing I can do to help her!  Eventually she fell into a fitfull sleep.  When she woke she was less miserable but remained grumpy for the rest of the day.  The ride home was fun.  She would reach over and pinch or hit me and absolutely refused to wear her seatbelt ... we're travelling on the QE2 so I can't exactly pull over to put it back on her every 3 minutes!  She had one more "benadryl melt-down" at bedtime and then she slept well for the night.  

It's not the first time this has happened.  This is Dawsyn's regular reaction to benadryl but there doesn't seem to be anything else to give her for allergic reaction to the immunoglobulin.    Why she didn't react last month but did this month, I don't know but we will have to give her the benadryl as a preventive measure from now on.  That means we can expect this melt-down every time she has a treatment.  

She slept it off and woke up happy and busy this morning.  She found a phone while I brushed my teeth and was making calls by 7:30!  Good thing my friends get up early too!!   Somehow she can meet the next day like nothing's happened and I'm left feeling I've been run over by a train!  

On the bright side ... yes, there is a bright side ... these treatments really seem to be helping.  Since we've started the IVIG treatments in January, we've gone from 12-15 seizures nightly to only one or two every few days.  It's been a remarkable improvement and we're witnessing many positive effects of fewer seizures.  She's learning faster and more easily, she's less sleepy at school, she's less irritable (except for the DAY OF the treatment!) and all-in-all is doing very well.   It also means that we often get to sleep through a whole night without being awakened by a seizure ... 11:00 to 7:00!  What a treat!!  

There have also been some negative positives ... is that possible?  Apparently!  Because Dawsyn is feeling so much better, she is back to being HYPER and has been driving me CRAZY!!  I keep telling myself that it really is a good thing that she's feeling so good but it's been exhausting trying to keep up with her.  We are back to not only having to watch her nonstop but having to DO something with her nonstop.  She's no longer content to sit and play games on her computer or play the piano, she has to have one of us DOING something with her at all times or else she's doing something she shouldn't be.  The biggest temptations lately are the stove, the microwave and the phones.  She likes to crawl up onto the stove and turn it on ... she says she's making macaroni!  She turns the microwave (usually empty) on and lets it run because she likes to count down the numbers with the timer!  That's safer for her than the stove but not so good for the microwave.   The phones!  Well, if you've phoned here lately or if I've phoned you, your number is somewhere in the phone history so don't be surprised if you get a call from her!  She does love to visit.  At 7:37 this morning she called my cousin who lives in the Ukraine!!  His Canadian cell phone number is stored in my cell phone for the times he's back in Canada.  I don't know what kind of message she got but she wasn't very impressed that there wasn't a real people on the other end!  Maybe you should check your messages Al, she may have left you a nasty one about answering when she calls!  By the time we left for school at 8:15, I had taken the phone away from her at least a dozen times.

So, is the trade-off worth it?  Yesterday, holding her and crying because I could do nothing to help her I'd have said a resounding "NO"!  However, today I know she's at school learning to read and socializing with her classmates because she didn't have any seizures last night so I guess I'll have to say "yes".   We'll see what tomorrow holds ... probably a few more phone calls!

WHAT FUN IT WILL BE!

I've just had a meeting with a few of my fund raising helpers and am so excited!  Our buddy Norm Morris is back from Hawaii and has hit the ground running.  In one morning he accomplished more than I have in a week.  He has found us an auctioneer so now we are having a LIVE auction as well as the silent auction.  He has secured some FABULOUS items for those auctions and is just full of great ideas.  We are so very glad to have him on board!!  Thank you, thank you, Norm.

Zoe and I are doing call-backs on businesses who have offered items for the auction and hope to have ticked off many more boxes on our "To Do" lists by the time the kids get home from school tonight.  

I'm off to see what more can be accomplished today!

Fund Raising Plans

We had a meeting tonight to plan our next fund raising event.  It will be a meal and silent auction on June 12, 2009.  The meal is planned and the committee is now approaching businesses and individuals for donations of items for the silent auction.  

To those of you who have already committed to provide an item, our sincerest thanks!  We already have an offer of a brand new set of golf clubs and a painting!!  We are looking forward to seeing lots of fun stuff come in.

Mother's Day

It was a really nice Mother's Day.  At church, the children all went to the front and sang their own version of "Mama Mia" and all the ladies went home with a rose.  

After church we picked up Zoe and the boys and took them all out for Mother's Day lunch ('cause her hubby had to work).  Lunch was a thank you for a job well done.  This morning, Zoe and her family were up bright and early and headed to Calgary where Zoe ran 5K in the Mother's Day Run. In doing so, she raised over $700 for 4 Paws for Ability!  What a trooper!!  

Once all the money from the past two weeks is submitted, I think we are just under the $5,000CDN mark.   I don't think that's too bad considering we haven't even done an official fund raiser yet!!

The rest of the day was spent just hanging out.  It was nice to have a relaxing day because tomorrow we hit the ground running once again!  

DIDSBURY SHOW & SHINE

The BBQ fell through but we knew we wouldn't be able to get that news out to everybody so should be there anyway.  We went down at 11 am, set up our table with it's paw print tablecloth and started to distribute information about 4 Paws for Ability and Dawsyn.   We plastered the window behind us with posters with pictures and managed to draw a little attention.  Our goal was no longer to raise $$ so much as raise awareness.  

We handed out puppy stickers to the children and doggie treats to the dogs that went by and gave their respective parents an information package about service dogs specifically highlighting Dawsyn's need.   Many friends dropped by a gave us their donation on the spot which was very encouraging but humbling at the same time.  We understand why fundraising is part of the requirement to receive a 4 Paws dog but it's difficult as well.  On the other hand, I was very excited to give an information package to the Dad of a boy with autism and encourage him to check out the website to see what a service dog could do for his son.  THAT is why they ask us to fund raise.  It not only helps us to raise the required training dollars but also educates others about the availability of service dogs for "untraditional" illnesses.  

A real treat this afternoon was meeting a dog that was very nearly identical to our Moshi. Deacon is a Siberian Husky that differs from Moshi only by being a male and having blue eyes rather than brown.  I actually got tears in my eyes he was so similar.  Even Dawsyn immediately called him Moshi.  We've offered to dog-sit anytime and am hopeful that we will be taken up on that offer!  However, in our excitement over meeting the dog, we forgot to ask his owner what his name was!!  Silly dog people! 

The reporter from the Didsbury Review cancelled our interview for Friday night so that will have to be rescheduled for sometime next week.   We hope to have a full story in the paper along with information about an upcoming fund raiser either this week or next.

CHANGE TO "DOGS FOR DAWSYN" FUNDRAISER

I have just been advised that there may have to be some changes to the "Dogs for Dawsyn" fundraiser.  I will post changes as they become available.

Sorry for the confusion.

Okay, so I'm not very good at this blogging stuff!  Mostly I think the humdrum of our day to day life is just too boring to subject you all to.

Dawsyn is participating in swimming lessons with her classmates.  This is all well and good except that the swimming class consists of nine seven and eight year olds and one instructor.  It is my humble opinion that one instructor does not have enough eyes, ears or arms to keep track of nine children in three feet of water even if one of those children isn't Dawsyn.  To instruct eight average children PLUS Dawsyn, she would have to possess powers that I can only dream of!!  So, guess who else is taking swimming lesson ... MOM!   Every afternoon for the next two weeks, my precious six hours of "me" time (translation "clean the house, do the laundry, cook the meals, plan a fundraising event or six, take a nap, have coffee with a friend" time) is interrupted with a trip to the swimming pool.  To make matters worse, many other parents also come to the pool.  However, they sit comfortably in the gallery drinking their London Fogs and Cafe Mochas while I am soaking wet trying to keep Dawsyn just a little bit interested in what the instructor is trying to teach them.    Just what I need, an audience!  On the bright side, Dawsyn absolutely LOVES the water and would swim (and I use the term loosely) all day if she were able.  As much as I begrudge the hour from my day, I wouldn't deprive her of the experience for anything.

I have discovered that "Coffee with the Girls" is really an essential part of every week ... everyday if I could get away with it!!  On Tuesday I met a couple of friends for a quick coffee and walked away with a fundraiser planned and ready to be executed by Saturday.  Brilliant minds loaded with good quality caffiene!  

This Saturday, May 9, Didsbury hosts its annual Show and Shine.  Thanks to two local business men who happen to be our friends and neighbours, we will be having a "Dogs for Dawsyn" BBQ on Main Street in the middle of all the Show and Shine traffic.  We are really excited to finally be doing something publicly to get the word out about this new opportunity to help Dawsyn.  

The next two days will be very busy distributing posters and information packets around town to promote the BBQ.

The local newspaper, The Didsbury Review, has asked to do a story about Dawsyn.  This will be a great opportunity to educate our community about Dravet's Syndrome as well as put in a plug for 4 Paws for Ability.  I will post a copy of the article when it is published ... if I can figure out how!!

A Break for Mom and Dad!

Thanks for a couple sets of very good friends, Dawsyn's Mom and Dad got to spend some time together without the kidlets this weekend!  Eureka, what excitement!!

Another couple asked Mom and Dad to join them at a seminar called LAUGH YOUR WAY TO A BETTER MARRIAGE.  And laugh we did.  The speaker, Mark Gungor, has a true gifting for telling it like it is and keeping you in stitches all at the same time.  All Friday evening and Saturday morning we laughed and learned and laughed and learned and laughed.  I highly recommend a visit to www.laughyourway.com.

Another couple offered to keep the kidlets over night as well so we didn't have to rush home in between the Friday and Saturday sessions.  Brother is quite easy to have around but any friend who offers to keep Dawsyn over night is a true friend indeed!  Thank you so much I&Z!!  

Now we're back to "normal".  Dad is home after a week long road trip and our days will be full of work and fund-raising plans and our evening will be full of baseball practices and fund-raising plans!   And so will be our lives for the next few weeks and months until we can move on to the next step in our Assistance Dog aquisition.  

Thank you, thank you for your interest in our journey.  I am so excited to have you all along for the ride!

For those of you who have asked about how to go about donating towards Dawsyn's Seizure Assistance Dog, please do not send any money to us.  Rather, either send a cheque directly to 4 Paws for Ability, 253 Dayton Avenue, Xenia, Ohio   45385   or you can donate online by going to www.4pawsforability.org.  Either way, please indicate that your donation is specifically for Dawsyn Harke so that we get credit for the fundraising.  Thank you so much!

About 4 Paws for Ability

Mission & Goals. The stated mission of 4 Paws is to enrich the lives of people with dis­abili­ties by the training and placement of service dogs to provide individuals with com­panionship and promote inde­pendent liv­ing, regardless of age and severity of disability. In doing so, they will also reduce the number of unwanted ani­mals who would otherwise be de­stroyed by obtaining the majority of their animals from shelters and rescue groups.

The Placement Process. Most service dog placement organizations have a waiting list of at least 2 to 5 years. These service dogs, with their specialized training, are costly to train, some costing up to $26,000, and most organizations rely on a single person, or small group of people, doing the fundrais­ing. Because the amount of funds they are able to raise is limited, they can only offer a certain number of dogs each year. At 4 Paws, the money doesn’t come out of the recipient’s pocket, either. What they have done is to create a fundraising requirement. They form a working relationship with re­cipients and their families to have them raise money for 4 Paws, so the waiting list is only as long as it takes the person to complete their fundraising requirement.

4 Paws was the first agency to begin placing skilled autism service dogs and continues to be the largest organization in the United States placing autism assistance dogs with tracking. This continues to be the most often placed type of service dog, with well over 100 placed thus far. 4 Paws trains several other types of service dogs, as well.

Hearing Service Dogs. Dogs are trained to alert their teammates to sounds such as smoke alarm, doorbell, or alarm clock.

Mobility Assistance Dogs. Mobility Assis­tance Dogs increase the independence of a person with limited mobility. They perform tasks such as retrieving dropped items and opening doors.

Seizure Service Dogs. A Seizure Service Dog will provide support for the child be­fore, during and after a seizure, as well as easing their medical appointments and treatments. Some of these dogs can be helped to learn to alert their family when the child is about to have a seizure.

In-Home Companion Dogs. These dogs are trained to meet the needs of the child as in any of the other types of training programs. The only difference is that the dog is not certified to work in public, most likely because the dog does not work well in a public setting. These dogs cost less than the other types of service dogs, and are not subject to “pet” regulations, such as apartments with a “no pet” policy.

Multipurpose Dogs. While some children are clearly suited to one specific type of service dog, there are many with multiple issues, or with diagnoses that do not seem to be addressed directly in the typical ser­vice dog categories. 4 Paws will develop a training program specifically tailored to meet the needs of these children.

All of these dogs also provide their owners with a constant companion and a special bond of friendship. They build a bridge be­tween children with disabilities and their peers.

 

For more information or to donate, please contact:

4 Paws for Ability

253 Dayton Ave.

Xenia, Ohio  45385

Phone: (937) 374-0385

On the Web:  4pawsforability.org

If you would like to help Dawsyn, please note that the donation is “In Honor of Dawsyn Harke” so that the family is given credit for their volunteer work.

My daughter, Dawsyn, suffers from a rare form of epilepsy called Dravet's Syndrome (Severe Myoclonic Epilepsy of Infancy). 

Dawsyn's story began on February 15, 2002, when she was 6 months old. Less than 24 hours after receiving her DPT vaccination, Dawsyn suffered her first seizure (30 minutes long). Doctors thought it was probably a one-time occurrence caused by the vaccination. Two months later, on April 15 and 16, Dawsyn had two more seizures (one was 30 minutes, the other 45 minutes). We knew then that something was terribly wrong and began the long journey towards diagnosis. Finally, in July of 2003 it was confirmed that Dawsyn had Dravet's Syndrome. We were told that she would continue to deteriorate physically and mentally until about 4 years old when things would level off. We were naturally devastated. (NOTE: the prognosis for Dravet's children is different now than believed back in 2003 but continues to be an incurable disease that cripples mind and body.)

Dawsyn did not follow the prognosis we were given and actually did very well for the following two years. She continue to have seizures but they were much shorter (seconds to minutes rather than half hour+) and occurred in clusters every 1-3 months. Despite that, Dawsyn continued to learn and develop like every other child. We were thrilled.

In January of 2006, we moved from Lethbridge to Didsbury. We don't know if it was the stress of the move or "something in the air" here in Didsbury, but Dawsyn immediately took a turn for the worse. For a year, we were frequent flyers at the local emergency room as well as at Alberta Children's Hospital. Dawsyn would have seizures that just wouldn't stop. In April of 2006, we almost lost her because she had received so many meds to stop the seizure that it shut down her respiratory system.  We gained better control over the length of her seizures but the numbers and frequency remained alarming.  Dawsyn was having 1 to 12 seizures every 24 hours, usually during the night. In January 2009, Dawsyn started receiving monthly intravenous treatments that have helped cut her seizures down to 3-4 every week.  

Despite the rough time she’s had, Dawsyn continues to learn and grow. She loves school and works hard on her modified curriculum.   She is classified as profoundly delayed academically, socially and physically but we continue to work hard with her and she continues to progress. 

We truly believe that Dawsyn will be healed of this incurable disease and rely on God for the wisdom and strength we need to carry on through the journey. 

Because this disease is so rare, research is slow (we don't get the big funding grants like cancer and AIDS) so the families with children with Dravet's have formed an alliance for public education and fund raising. Please go to www.idea-league.org to learn more.

Dawsyn has just recently been approved to receive a Seizure Alert Assistance Dog from 4 Paws for Ability.  We are currently working towards raising the $13,000 required to train her Service Dog.  For more information about 4 Paws, please visit www.4pawsforability.org.