Jadon is SIX + a few weeks

Jadon is 6 years old…plus a few weeks.

Jadon turned six on the 25^th of June and a funny thing happened this year – we were busy.  We were busy LIVING life.  We celebrate our big hero every single day and we have always gone BIG for his birthday month, but this one kind of snuck up on us.  We forewent the big party for a gathering with a few of his close friends.  And what fun they had!

This year, we celebrated his birthday by going bowling – a first for Bug.  Afterwards, we all went out for pizza where he opened presents and then proceeded to take a nap…at the restaurant.  Phew, partying can sure wear a kid out!   The Saturday following his birthday was Bad News Bears baseball and for the third year in a row Jadon ran the bases with his team.  Following the homerun trot his team sang happy birthday to him at home plate.  This is definitely a highlight of the whole year.

 

The pure miracle of Jadon doesn’t come to mind on a day to day basis.  It is the milestones where we stop and look around at where we are.

SIX YEARS.

Three times the prognosis of SMA Type 1.  The really strange thing is that these days seem to be our best days yet.  We don’t like to say too much positive stuff in fear that SMA will rear its ugly head reminding us of its horrible power over our lives.  So, we’ll say it softly, just once…he’s doing awesome.

Jadon has completed kindergarten and will be entering the 1^st grade this fall.  He has friends from school, friends from baseball, and even has friends who come to read to him in the summertime.  Not to mention all of his friends across the country, ones he has met in person and others on-line.  He loves baseball, being outside, playing games, watching movies and rolling his eyes at his little sister’s crazy antics.  He is a six year old little boy.

 

A week before Jadon’s birthday was the national SMA conference which was held right here in Kansas City.  This was an incredible experience as we got to see many families we already knew and others we had never met.  There were many families who have been fighting longer than us, families who had just been diagnosed and families that look forward to one day seeing their loved ones in heaven.  It is something to see families at all these different stages of the SMA journey.

We have been fighting this fight for almost six years and when we hear someone say they just got diagnosed it takes us right back to THAT day.

On this day (July 16th) six years ago Jadon was 3 weeks old and we were yet to hear the words Spinal Muscular Atrophy.  We were yet to have our lives turned upside down.  We were yet to understand how strong our hero would have to be.  How strong we would have to be.  Jadon has been through a lot in six years.  There have been some extremely scary days that we thought would be our last but there have been far more beautiful days.  Days where his eyes sparkle just a little brighter.  Days when the faint giggle on his breathe is a little louder.  So many days that we thought we would never have.  So while the SMA storm rages on within our life we will continue to find new ways to “Dance in the Rain”.

This Saturday, Jadon is going fishing with his buddies…..another first.

The Birthday Haul

Old Settlers Parade

The Johnson County Old Settlers Parade is the largest parade in the state of Kansas. It has an average of 160 entries, including 16 area High School and Middle School bands, numerous club and organization entries and several commercial floats. The parade is attended by between 65,000 and 75,000 people.  Jadon’s Hope Foundation entered a float themed “Dancing in the Rain”.

The day was a perfect sunny 70 degrees.  JHF supporters walked with the float while SMA warriors Jadon, Arturo, and Amira road along.  3,000 SMA fact cards and over 100 t-shirts were handed out to the crowd.  It was a perfect day.

A big giant THANK YOU to all the walkers and riders who helped spread SMA awareness.

D-Day #5

2009

Today marks 5 years since we received the most devastating news parents could receive.  This is D-Day or Diagnosis Day.  The day all the hopes and dreams we had for Jadon were shattered.  In 2010 and 2011, this day was marked with a lot of sorrow and mourning.  Mourning the loss of what was meant to be.

But as the years have progressed, we don’t fear today as much as we did.  Don’t get us wrong, there is still pain and will always be mourning, but as Jadon has continued to overcome insurmountable obstacles we focus on the good.

We focus on what he has accomplished.

We focus on the immense love and joy he has brought to our family.

We focus on the impact he has on so many.

We focus on dancing in the rain.

Over the years, we have learned that the purpose God has for Jadon far exceeds what we had shaped in our minds 5 years ago.  We will continue to trust and follow with Jadon leading the way.  We will continue to have faith and know that love and hope truly does endure all.

Today also marks an even bigger reason for attention –Jadon is officially 5 years and 2 months old.  Amazing! Keep fighting sweet boy.  We love you so much Bug and are so incredibly proud of you!!

SMA Awareness – What We Want You to Know

 

We are often asked what we want people to be aware of in regards to SMA.  This blog could be 20 times longer but it encompasses the basics we would like everyone to know.  It’s not that a person needs to be an expert but if  the need arises having read this information may make a difference.

First – We want people to know the disease exists.  SMA = Spinal Muscular Atrophy.

– Most people have never heard of Spinal Muscular Atrophy, including medical professionals (We certainly had not).  We want everyone to have heard of the disease.  When I say “Spinal Muscular Atrophy” I want people to say “I’ve heard of that” rather than “Gesundheit” because they think I just sneezed.

To get people’s attention we must tell them how severe the disease is
– #1 Genetic killer of kids under 2
– 90% of the kids diagnosed with SMA Type 1 don’t live to see their second birthday

Second – Symptoms and Diagnosis

There are 4 main types of SMA with Type 1 being the most severe.  As a general rule the type is dictated by age of onset and furthest milestone reached. The other 3 types would have similar symptoms but less severe.

These are symptoms for a type1 (Usually diagnosed between 0-6 mnths of age):
– Muscle weakness, limpness in the arms and legs. “floppy baby”
– Most type 1s will never sit on their own and won’t be able to hold their head up
– A weak cry, cough, and swallow
– Their belly will be very active during breathing
– The chest will be narrow and the belly rounded giving the torso a pear shape
– Most will develop a frog-leg position when lying flat on their back
– The tongue often twitches

These are several symptoms but the child may have all or only a few of these. 

Third – You can be tested to see if you are a carrier of the disease. 

-1 in 40 people carry the gene that causes SMA.
– If you are considering having children it is advisable to be tested.  Knowledge is power.
– If anyone in your family is a carrier of SMA (even second or third cousins) your chances of being a carrier increase.  If you have a first cousin that is a carrier, your odds increase to 1 in 8. (I am a carrier so I hope my cousins are paying attention.)

Two carriers having a child present a 25% chance of the child being affected by SMA.

Fourth – HOPE ENDURES

-Newly diagnosed families NEED to know that there are options of care that can extend the child’s life.  Despite the staggering statistics there are care options that can (not always) extend the life of even the most severe cases.  This care relies on the help from many machines and a specialized diet.  These options may not be right for every family but every family needs to know they exist.  Doctors definitely need to know these options exist and offer these options to newly diagnosed families, not just tell them there is nothing that can be done; just take your child home and love them.

Fifth – There is a lot of very promising research.

-There is so much scientifically known about SMA that we truly believe there will be a cure!!  Many pre-clinical research is currently active, five of which are now in clinical trials.
-Gene Therapy is the most promising research right now and it entered human clinical trial earlier this year (2014).  This is very, very, exciting!!!!

–Isis just announced that it will begin a pivotal Phase 3 study evaluating ISIS-SMNRx.

Sixth – Newborn Screening

– All newborns are tested for several diseases but SMA is not one of them.  It should be included and there are many people diligently working to make this possible.  It would be beneficial to know an SMA diagnosis as early as possible.  Once a cure is discovered this becomes even more critical.

This is the very basics of SMA Awareness.

Check out our Facebook page the entire month of August as we provide more insights into the SMA world and please, if you have questions, don’t hesitate to ask: www.facebook.com/JadonsHopeFoundation

5 Years Old and Counting

Jadon “The BUG” Burks
June 25th, 2009

Where do you see yourself in five years?

A common interview question many companies have used for a long time.

If we would have been asked this question five years ago on this day, the day Jadon was born, our answer would have been wrong.  Surely we would have forecasted higher salaries, a new house, nice cars, and oh yeah, Jadon being all boy running around like crazy and starting Kindergarten in the fall.

Had we been asked this question just two short months later, our answer would have been drastically different and thankfully, that too would have been wrong.  We would have forecasted that on this day we would be visiting Jadon’s gravesite.  Probably releasing balloons, honoring our son, crying a lot and wondering why our precious little boy had to leave us so soon.  At two months we were also prepared for the worst financially as well…but we didn’t care about that.

We are not even sure exactly where our reality falls within these two forecasts…and truthfully it doesn’t even matter.

Shortly after we were told that Jadon would be lucky to live past his first birthday we met our “face of hope.”  Hope can come from anywhere or anyone.  For us it was the face of a 5 year old boy who also has SMA Type 1.  Charlie Sykora and his family were the first members of our new SMA family that we met.  Every child is different, Charlie’s mom Kim told us several times and we soon came to realize this statement and understand how much stronger Charlie was than Jadon.  However, we were told only 50% of kids live to be one and only 10% live to be two.  Here was Charlie – happy, healthy, and an optimistic future of a five year old.  Suddenly we had hope.  We began to look beyond the statistics and what the doctors initially told us.  We armed ourselves for the battle ahead – to give Jadon the best quality of life we could.  To help him live and help him thrive. As the months went on, we were introduced to even more amazing kiddos like Charlie who were drastically beating the odds.  Kids like Veronica, Lizzy, Madison, Danielle, Aubrey, Kaige, Cashel, Allie, and MJ (who is now 26 years old).

The road has been anything but easy, but it has been rewarding.  So many things we gave up on have actually come to pass.  Jadon has:

Hung out with Charlie, and Emma (Charlie’s sister) Jadon’s 2nd Birthday (Huge Milestone)

Become a BIG BROTHER

Gone to school

Been on a baseball team

Gone to Disney

We have been inspired by so many and now we suddenly find ourselves looking at our five year old son truly understanding that Hope Endures.  We wonder whose inspiration Jadon is.  If a family has a weak type 1 and they need an example to follow, our little hero has conquered some huge obstacles.  Don’t get us wrong, there have been many very dark scary days where it seemed impossible we would see tomorrow.  But Hope Endured and tomorrow came.  Then another tomorrow, and then another, then another, until we now find ourselves celebrating his 1,826^th day of changing our lives for the good.

SMA BUDDIES

To put this into perspective, Jadon and his friends who have surpassed the 5 year mark have done something most of us don’t have a chance of doing.  At 5 years old they have lived 2.5 times longer than their life expectancy.  If the average life expectancy in America is 80 years, we would all have to live to 200 years old to do what these amazing kids are doing.

Happy 5^th Birthday Jadon!!!  We love you so incredibly much and are immensely proud of you.  You are our light, our inspiration and our hope.

A Parade of Awareness

 

On Saturday, September 7^th, Jadon’s Hope Foundation entered a float into the Old Settlers Parade here in Olathe Kansas.  The parade boasts that it is the largest in Kansas with over 70,000 attendees.  We felt it would be a great way to spread awareness for Spinal Muscular Atrophy (SMA).  1 in 40 people carry the gene that causes the #1 genetic killer of kids under 2.  If the attendance met the expectations there were statistically 1,750 carriers in the crowd.  Most of those carriers have likely never heard of the disease that takes the lives of 90% of those affected before they celebrate their second birthday.

We decided the theme for the float would be based on the phrase that has become our battle cry.

“Life is not about waiting for the storms to pass, it is about learning to dance in the rain.”

With a storm like SMA it would be easy to feel sorry for ourselves, it would be SO much easier to never leave the comforts of our home.  With so much equipment it is always nice to have electricity just an extension cord away.  It would be easier to let the storm pass us by but we prefer to do things, anything to escape our SMA reality.  Anything to simply live life.

As Saturday approached, the forecast temperature continued to rise and by Friday night they predicted a humid 94 degree day.  We thought of pulling our 3 honored warriors off the float but then that just would not be “Dancing in the Rain”.

Saturday morning was warm but a breeze as sweet as angel’s breath (SMA angels perhaps) kept everyone cool.  We loaded the float with Cody and Hunter Edwards (SMA type2) up front and Jadon aka “The BUG” (SMA type1) positioned (unintentionally) under… the bug.

It was an emotional ride to say the least.  Portions of the crowd would cheer when they saw the boys.  There were many “Jadon’s Hope BUG RUN” shirts in the crowd and we overheard several people say “Is he on there?  Oh there he is.  HEY BUG!!”

As if that wasn’t emotional enough I looked behind the float and saw all of Jadon’s friends walking.  They were handing out awareness and dancing with their umbrellas.  Kids helping kids is such a powerful image.

It was another one of those amazing days where I worry about how it will turn out and then end up being blown away by the power of the situation.  Blown away by the power of God working in our lives.

A big giant tremendously HUGE Thank You to everyone involved.  Thank You Cody & Hunter for joining us.  Thank you to those who helped with assembly, drove the truck and loaned the trailer, helped with materials, walked, spread the word, and cheered.  You guys are all so amazing.

We definitely “Danced in the Rain”.

To find out more about SMA visit our website: JadonsHope.org

Long Distance Doctor’s Appointment

 

A long distance Doctor’s appointment is simply an opportunity to “Dance in the Rain”.

Jadon sees the amazing Dr Schroth (SMA Specialist) once a year.  The downfall, some would say, is the fact that we have to drive 8 hours to see her.  She is based at American Family Children’s Hospital in Madison WI.  While her expertise is worth every minute of drive time we also like to make a mini vacation out of the trip.

This year’s trip was very enjoyable and much less stressful than last year.  At this time last year Jadon was having MAJOR episodes where his Oxygen saturation would sometimes drop to ZERO.  To say we were on HIGH alert is an understatement.  Since his trach surgery in August we have not seen those extremes and we are working on relaxing……. just a little bit.  However, we fully realize we won’t ever be completely relaxed outside of our comfortable bubble within the SMA Fighting BUG Cave.  It only takes a short while outside the cave to fully appreciate the conveniences we have at home.  Simple things like, an outlet for every piece of equipment, counter space, and most importantly…raised work space.  Jadon’s bed, treatment table, and living room cart are all at counter top height which makes for easy transfers, easy treatments, and easy play time.

But……a BUG’s gotta dance!
So we venture out.

Ayden, Ella, and Jadon

This year we altered our course and headed for Omaha to visit the world famous zoo as well as the world famous Ella and Ayden.  We came in the night before and then visited the zoo on Saturday.  It was not the most pleasant day but we made the best of it and truly had a great time.  We danced in the rain…literally.  It was pretty chilly and very rainy but we visited the indoor exhibits and visited with our SMA family.

Sunday we headed  for Madison (a 7 hour drive) and stopped off outside Des Moines to meet up with The beautiful Stella Bella.

Stella and Jadon

On Monday we traveled to Fond du Lac WI to get some frozen custard from Gilles and more importantly meet up with Lucy and Mateo.

The whole group

What’s up dude?

Sweet Lucy

Tuesday it was time to work but not without it’s visitations as well.  Of course we got to see Dr. Schroth (who we love) but we also got to meet Peyton for the first time.  Such an amazing young lady.

The Amazing Dr Schroth

 

Peyton and Jadon

Snacks for Dr Schroth

Bone Density Scan

X-rays

Only a 7 hour day at the hospital but well worth it.  We rested that night and headed for home on Wednesday morning.

It was a great trip.
Not necessarily relaxing, but very fun.  It is worth so much to see Jadon happy and out doing things.

“Life isn’t about waiting for the storm to pass,
It’s about learning to Dance in the Rain”

Even little sister did well.

Reluctance to Dream

If the blessing of SMA is “Living for Today”, the curse (one of many) may be the “Reluctance to Dream.”

When SMA accosted our lives over 3 years ago we knew we could never return to the world of “It won’t happen to us”.  As we wait patiently for the arrival of our daughter we know it is only by the grace of God that we stand here today.  It is through God’s grace that we are having another child and His grace is allowing Jadon to meet his sister.  This is something we do not take for granted.   In fact, I  made this shirt two years ago in case we were ever blessed with another child and Jadon wasn’t here to place his hands on momma’s belly.

Jadon is not only here but he is thriving and he is very excited to meet his little sister.  Kristin has been recording BGB’s (that’s Baby Girl Burks) heartbeat at her weekly doctor visits.  Jadon is simply mesmerized when she plays the recording for him.  We play it at least 5 times or he gets very grumpy.

We have already had testing done and BGB is SMA free.

But like I said, we were evicted from that blissful world of “It won’t happen to us.”  She doesn’t have SMA but there are a thousand and seventeen other things that could be wrong with her.  How do you define “wrong?”  By definition there is a lot “wrong” with Jadon but he is perfect to us.  He is exactly who he was meant to be.  He is our son.

We really aren’t in a state of “worry”, just simply that crazy “Reluctance to Dream.”  We want to dream of her future and we want to plan all the great things she will do.  Those things would be OUR dreams and OUR plans, not hers and likely not God’s.

So we will try and finish her room before she arrives and we will pray for her every night.  We pray with Jadon that she will be healthy, happy, smart, beautiful, and funny.  She better be funny, healthy first, but then funny.

We will welcome her into our lives in less than 7 days (WOW!!) and she will be loved unconditionally.  She will have the best big brother to learn from and two parents who fully understand what a blessing she is.

LOCKDOWN

Tis the season!  Tis the season to batten down the hatches, stock up on supplies, put up the signs, and start the inquisitions.  That’s right, it’s LOCKDOWN 2012.

Winters can be hard for SMA families.  Because a common cold could literally be fatal for someone with SMA, extra precautions are taken.

We wash our hands hundreds of times a day and therefore must stock up on our hand sanitizer; this is our first shipment

We put up our signs:
“Wash your hands and wipe your feet,
Come in this house sick and you’ll get beat!”

We start the inquisitions of anyone coming into our home:

“Are you sick?
Have you been sick?
Are you thinking of getting sick?
Have you been around anyone who is sick?
Heard of anyone being sick?”

We don’t want “sick” in our house.

While we lock out the outside world it also means that we are locked in.  It makes for an incredibly long winter.  Just ask Perry the Platapus, he doesn’t care for our “lockdown reindeer games”.

Cabin fever sets in and we long for any kind of contact to the world outside these walls.

This year we are getting it!

Jadon started pre-school this year and while it was difficult to stop going just before Halloween, Jadon’s teacher has taken his inclusion to a new level.  Miss Cathy, has arranged for Jadon to Skype into the class each morning for a short period of time.

For those that don’t know “Skype”, it basically means that using a computer in our home we can SEE and HEAR the class.  Using a computer in the classroom, Jadon’s class can SEE and HEAR us.  It is AWESOME!

Jadon absolutely loves seeing his classmates.  Miss Cathy has taken it even further to include Jadon in the Halloween parade and also on a recent field trip.  She carries the laptop around with her so Jadon can see everyone and everything.  While Skyping is not the same as being there it is a very good substitute.

We are so “super” thankful for all of Jadon’s classmates as well as Ms. Patti, Ms. Pam, Ms. Melene, Mr. Dave,  and most of all for the amazing, incredible, “High Tech” Ms. Cathy.  Thank You Rolling Ridge Elementary, GO Rockets!!!

D-DAY (Diagnosis Day #3)

August 25^th 2009, is our D-DAY.  The doctors didn’t tell us what our life with SMA would look like today, 3 years later.  What they told us was that 3 years from that day when we spoke of Jadon’s life, we would be speaking of a life that WAS, not a life that can be.  They told us we most likely had less than a year with him and definitely no more than 2.

I don’t blame the doctors for the weather they were forecasting.  The statistics they referred to are unfortunately very true:

-SMA is the number one killer of children under 2
-50% of SMA type1 kids will not see their 1^st birthday
-90% of SMA type 1 kids will not see their 2^nd birthday

It’s not so much about WHAT they did or didn’t know as it is WHO they didn’t know.

They didn’t know all the SMA families we now know.  We have focused our Facebook page ( Jadon’s Hope Foundation) this month on these people choosing to make life the most it can be despite the storm of SMA in their lives. “Life is not about waiting for the Storms to pass, it is about learning to Dance In the Rain.”  These kids and these families have inspired us to new heights

 We know it’s by God’s grace that we are still allowed to look upon Jadon’s face and we feel incredibly blessed to do so.  At the same time we mourn for those short lives that make these statistics true.  Life is way too short and while this journey is rough I am glad our course has been altered.  I am confident that we will not be returning to our formerly scheduled path.  I am confident that we have been forever changed.  For that I am thankful, but SMA still sucks.  We have learned a new appreciation for life.  I would rather have less and appreciate it, than have it all and still be looking for more.

SMA is one nasty storm but we are determined to dance in it’s rain.  The funny thing is, before D-DAY our life had storms but we usually failed to dance.  Now we make the time for life, we appreciate the time, and we enjoy every single second we can. Every life has storms and none of us are guaranteed tomorrow.

What will you do today to “Dance in the Rain”?

This video is set to the song “What Faith Can Do” by Kutless.  This became “BUG’s song” after a friend did a slideshow for us shortly after his G-tube surgery.  Now, everything stops when it comes on the radio and we sing with BUG.  The video shows his last two “unexpected” birthdays and his most recent surgery.  With a tracheostomy there is always a chance the patient will lose the ability to make sound.  We prayed for sound, any sound…it’s amazing “What Faith Can Do”.