The Fabulous Miss G, Forever In Our Hearts

Whenever we suffer a loss in our SMA family, it is hard.  And each one has its own affect on us.  We reside in a world that we wish with every fiber of our being didn’t exist.  A world where little ones become angels far too soon and parents have to say good-bye to their precious babies.  But this one, this one just crushed us.  Gwendolyn is very special to us as are Bill, Victoria and little sis, Eleanora.  Over the years and despite the many miles that separate us, an amazing bond, connection, friendship has grown.  We have celebrated with each other, worried and cried with each other, laughed with each other, lifted each other up, helped each other out and leaned on each other.  We have just been there for each other.

And Jadon and Gwendolyn?  Well, they were boyfriend and girlfriend.  Whenever Bug saw a picture of Miss G his eyes would get as big as saucers, he would purse his little lips and get major “happy belly.”  And when Miss G saw Jadon, she would bat those gorgeous long lashes and tap, tap, tap her finger.  He was her blue-eyed boyfriend and she was his fabulous Miss G.  Everywhere you look in Jadon’s bedroom, there is something from Gwendolyn.  Multiple pics that adorn his shelves.  The turtle she gave him years ago that to this day he insists is turned on at night.  The blanket that he loves to have his feet snuggled up in.  Valentine’s Day cards she made him.  Treasures she picked out for him during trips to Disney.  Pout-Pout Fish books.  Tickle Monster book.  She is there.

Whenever we would go out on adventures and Jadon got a souvenir, he insisted that Miss G would get one too.  Always something blue for him.  Purple for her.  Early in their “courtship”, Jadon found out that a little boy had given Miss G a flower while at a playground.  That simply wouldn’t do and he made sure Miss G had an even bigger purple flower from him.

To profess his love for Miss G, Jadon even got a little ink.

And it worked!

Earlier this year, I was blessed to be able to spend some time with Bill, Victoria, Gwendolyn and Eleanora when I traveled out to California for business.  It was magical – a moment when you hoped time would just stand still.  And as the sun began to set and night fell, I didn’t want the evening to end.  I wanted to soak up every second because I didn’t know the next time we would see each other again.  When we finally had to say our good-byes, I raced to my room to call Tony.  I told him we HAD to figure out a way for all of us to get together.  For Jadon and Gwendolyn to meet.  Unfortunately, that never happened.  Just one more thing SMA has robbed from our kiddos.

When Bill called early Saturday morning, our hearts shattered into a million pieces.  The wind knocked out of us.  How could this be possible?  My knees buckled as I crumbled into a heap onto the floor.  This is NOT supposed to be happening.  It simply wasn’t fair.

Ever since Jadon was little, he would randomly look into the corners of the room and jabber/chat.  We firmly believe he is talking to his angels watching over him.  Throughout the rest of the day on Saturday, we struggled with how to tell Jadon about his fabulous Miss G.  We desperately fought off tears anytime we were face-to-face with him.  As we got him settled in his room to begin nighttime treatments, we finally mustered up enough courage.  We told him we had some very sad news to share.  He looked at us very seriously and with his eyes said “Yes.”  We said, it’s about Miss G.  Again “Yes.”  We asked him, do you already know?  This time BIG, BIG “Yes.”  We asked, have you been talking to Miss G?  Another BIG, BIG “Yes.”  He had been chatting earlier in his room during his chill-time.  We should have known he already had a very special visitor come by to let him know she was okay and would be watching over him.  Even now these two have an incredible bond that will always be there.  We take some comfort knowing that the fabulous Miss G is continuing to watch over him and be with him.  

The world was a better place with Gwendolyn Strong in it.

The world is a better place because she lived.

We are better because of Gwendolyn’s life and we will always carry a part of Miss G  with us.

We will Never Give Up.

We are… G-STRONG.

a

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

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

Jadon’s Hope Foundation Partners with Jacey’s Journey to Fund Angel Arms

The gift of mobility is often lost on many.  Truth be told, prior to Jadon’s diagnosis it was something we too took for granted.  Our eyes have since been opened.  With a disease like SMA, watching your child be robbed of this gift is heart-wrenching.  Often times we find ourselves yearning and longing for movement.  Any movement.  No matter how minimal or slight.

We would like to introduce you to Melissa and Allan Kloiber, Mom and Dad to adorable Jacey and founders of Jacey’s Journey.  Like so many SMA parents, they wanted Jacey to experience what had been lost.  They wanted to see her thrive and be able to reach for the world around her like so many kiddos her age.  And so began their quest to make it happen and the invention of the Angel Arm.

 

 

 

 

 

 

 

 

Gravity is the worst enemy to a child with extremely low muscle tone.  By reducing gravity, movement can often occur when it would not have otherwise.  The counterweight of the Angel Arm takes the pull of gravity off the child’s limb enabling them to move.  The device is developed to be used in any direction, on any limb.  While we could go into the technical aspects of the device, seeing is truly believing.

 

 

Simply put, the Angel Arm helps SMA Type 1 kiddos move.

 

Grace Grutter, mom to sweet Nella, summed it up beautifully when describing Nella’s initial use of the Angel Arm:

“I was in tears yesterday…With the help of Nella’s new angel arm, I was able to see her reach for a toy for the very first time in her life! It was such an amazing moment that I will forever be grateful for. Nella was so determined to grab it, and was SO proud of herself. She was smiling SO big! What a huge blessing to be able to have this moment.”

We have been inspired by the determination the Kloibers have demonstrated in developing this device and building them for other SMA families.  Melissa and Allan only charge for materials and shipping, not for the extensive time spent lovingly building or packaging the Angel Arm.  Despite only charging for materials, the device may be too expensive for some families.  Because of this, they have set up a wish list for families asking for funding of the arm.

 

Jadon’s Hope Foundation is proud to announce we have issued our first grant to help fund the Angel Arm wish list.  JHF wants to see every child who wants an Angel Arm to have an Angel Arm.  We are committed and prepared to do more if the need arises.    We believe so strongly in what the Kloibers have created that our hope is to do all we can to help get kids moving.

As SMA families it is important that we all continue to support each other through this life storm.  Necessity is the mother of invention and where there is a need SMA families find a way.  If you would like to directly support the efforts of funding Angel Arms you can do so at the following link.  Every dollar donated through this link will go directly to funding Angel Arms for families.

 

 

If you are an SMA Family wanting to learn more about the Angel Arm, please click on the following link.

 

 If you would like to apply for financial assistance for an Angel Arm please use this link.

 

 

 

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.

Heading to Disney World

Jadon Burks what do you plan to do NEXT…

As we prepare to embark upon our greatest “Dance in the Rain” adventure yet I can’t help but think about the timing.  God’s timing is always better than ours, I just wish it was easier to recognize.

Jadon is heading to Walt Disney World and the plans have been in the works for over two years.  The first time we spoke to Make A Wish Foundation was early 2012 and the plan was for them to grant his wish in September of that year.  Spring of 2012 still stands as the darkest part of this SMA storm… so far.  Jadon was very unstable and had major episodes on a regular basis with 10 of them nearly ending our journey.  We were scared and confused and “knew” we didn’t have much time.

When Make A Wish granted Jadon the wish of his dreams we struggled to figure out what that wish would be.  Our only criteria was that it would make his eyes light up.  We looked for things that would not require us to travel as we were truly scared to leave the comfort of our medical strong hold we call home.  Everything we came up with just didn’t seem right and we kept coming back to the magic of Disney World.  Jadon loves so many of the characters.

We communicate with Jadon through his eyes.  Closing his eyes means “No” and looking up means “Yes”.  It isn’t a perfect system when he doesn’t feel like participating but there is always the tell tale sign of the “Happy Belly”.  When his belly starts bouncing with excitement there is no question of his approval.  When we asked him if he wanted to go see the “real” Woody and Buzz Lightyear he nearly bounced himself right out of his chair.

So here we go.

We are loading up the Family Truckster and heading cross country, but instead of the Family Truckster we are doing it Cousin Eddie style…in an RV.  Make A Wish has rented an RV for us to travel in.  The advantage of traveling by RV is that there will not be the need to unload the vehicle and take all of Jadon’s equipment into a hotel room.  When we pull into our site at night everything will already be set up for treatments.  It seems like a great plan.

Once we get to Florida we will be staying at a “Storybook resort…where children with life-threatening illnesses and their families are treated to week long, cost-free fantasy vacations.”  This amazing place is called Give Kids the World.  It appears it may be a struggle to drag ourselves away from the resort in order to visit the theme parks.  This place looks awesome.

The excitement is really building now and we can feel the magic surrounding us.  Jadon’s Wish Granters and several friends came over the other night to wish him a safe and exciting trip.  That was the night we really, really started to get excited.  I truly wish we could say we weren’t nervous but that would be a lie, in fact we’re shittin’ bricks.  See how nervous I am…I know I shouldn’t use language like that and I apologize…we’re shittin’ rocks.

However, there are a whole lot less rocks than there would have been two years ago.  We didn’t know if Jadon would make it to the fall of 2012 and the trip was postponed so Jadon could have Tracheostomy surgery.  He would not have been recovered in time for the trip and therefore it was cancelled.  He is more than recovered now and he is truly thriving.  Life is better now than it was that crazy dark spring 2 years ago.  We see now, what we thought was being lost was actually simply being reworked, redirected, and made a whole lot better.

Please pray for us.  Please pray for safe travels and that Jadon will have the time of his life.

The BUG RUN – 2014

On April 5^th 2014 nearly 600 people gathered on a frigid day in Olathe to take a stand against Spinal Muscular Atrophy (SMA).  Planning of The Second Annual BUG RUN began exactly 363 days earlier.  The groups of volunteers that have worked on the BUG RUN for the last year have been nothing short of amazing.  We would not be able to fit an adequate number of Thank Yous in this blog.  We are completely blown away on a regular basis by those around us and their dedication to the fight against SMA.

The BUG RUN race director Amy Vrban does an amazing job getting (and keeping) everything in order.  She has a spectacular group of people who each do their part perfectly.  Big giant thank yous to Cathy, Jennifer, Melissa, Melissa, Katie, Andrea, John, Lori, Jennifer, Suzie, Michelle, Joanne, Leslie, Allison, and Julie.  Beyond this core we had close to 150 volunteers the day of the race as well as so many people simply spreading the word.  THANK YOU.

We couldn’t hold the event if it wasn’t for our amazing sponsors, many of whom were sponsors for the second year in a row.  Thank You so much.

The goal was to make this year better, and hopefully bigger.  Both goals were substantially surpassed.  Our emcee, Patrick Fazio of 41 Action News and Kristin kept the crowd engaged with commentary and SMA trivia leading up to the start of the race.

Kristin Burks, Patrick Fazio, and Amy Vrban

The big surprise for Kristin and I came when Olathe Mayor Mike Copeland presented a proclamation that the day would be known as Jadon’s Hope Day.  I could barely keep my emotions off my cheek when I thought of the city recognizing the disease as well as the foundation.  You can’t cry in front of the Mayor!

Mayor Mike Copeland presenting a proclamation.

Michelle Boucher singing the National Anthem.

The National Anthem was amazing.

 

61 balloons for 61 angels.

61 balloons were released in honor of the 61 angels that gained their wings in the year since the last BUG RUN.  This portion of the day was extremely emotional for us as we thought of those 61 families who go to bed at night wishing they had just one more day with their little ones.  These are kiddos whose stories we have followed, some we have met personally, but all have touched our hearts.  There are so many others who don’t even know about because they don’t make a connection and possibly don’t have the support they desire.  We want every family who wants help to get it.  We want every family who has lost a child to know they WILL NOT be forgotten.

 

“I RUN IN HONOR OF” stickers.

This year runners had the option of running for an SMA child.  They simply chose a sticker from 60 SMA warriors/angels.  The runners dedicated their run to these kiddos from across the country.  One of the SMA kids who was being run for received the medal his runner won at the race.  How amazing is that?

Custom shirts, bibs, and medals

 

Top 3 runners!

Bill Allen
1st Place

Ricardo Medellin 2nd Place

Hadley Cornish
3rd Place

CLICK HERE FOR COMPLETE LIST OF RESULTS

 

The Bitty BUG RUN

Kids under 5 run in the Bitty BUG RUN.  Do you know who won?
WE ALL DID…because their all so darn cute!
Kids helping kids will pull at our heart strings every single time.

 

It was truly an amazing day and we are blessed to live in a community that is willing to stand beside us, put on a cape and fight this horrible disease.  SMA is hard, very hard, but to feel the love that surrounds us makes the fight seem a little easier.  It is that feeling that we want to pass on to other SMA families, that feeling of inclusion.  That inclusion may be what some families need just to fight one more day, and then another, and then another.

We will see you you next year for ANOTHER BUG RUN!!!!!!
Mark your calendar- APRIL 4th 2015

 

 

 

Three strong SMA Mommas.

Pictures courtesy of Jeff Lentz.  Thank you Jeff!

 

Pictures of 2nd Annual Jadon’s Hope BUG RUN

  Jadon’s Hope BUG RUN
was held on
April 5th, 2014

 

 

 

SMA Awareness- The Ella Hunt Story

Despite the fact that SMA is the #1 genetic killer of kids under two years old most people have never heard of it.  Even doctors in major hospitals are extremely uneducated about the disease.  This is a story that exemplifies why SMA awareness needs to be spread. Ella Hunt came into the world on August 2^nd 2011 and was welcomed by her parents Erica and Dan as well as her two very active brothers, Noah and Carter.  When she was just 4 months old she presented as “significantly delayed” and the tests began.  The Hunts were given their beautiful daughters devastating diagnosis of SMA Type1, the most severe, on December 20^, 2011. Erica writing about that day:

“Picture this moment, I (mom) sit in a dark hospital room at 4 am waiting for the clock to tick as this is the day we are running tests to determine what is wrong with our precious baby girl. I had heard the letters SMA mentioned by both the Developmental Pediatrician and the Neurologist. I had also been warned NOT to google anything by the doc’s. By 4 am I couldn’t stand it. I googled it and there it was……

SMA, a fatal illness with life expectancy of less than two years. A disease that limits kiddos from having (any) muscle movement, a swallow or respiratory function. I was heartbroken and with momma’s intuition I knew this was it.

Less than 6 hours later, my worst fears were confirmed. Only it was worse news than we thought. Upon diagnosis, we were told we had weeks to months left with her. ‘Go home and hold her.

‘She is going to die in your arms or in her sleep’ the doctors told us.

I vowed then to never put her down until that time came. We cried out in agony realizing this gift of life would be taken home way too soon.The hospital sent us home (a 3 hour drive) and had us immediately placed on Hospice. All her physical therapy services were cancelled and little to our knowledge at the time, Ella was also discharged as a patient (not just discharged from the hospital).

THERE WAS NO HOPE.

We were encouraged to sign a DNR (Do Not Resuscitate) form which neither Dan nor I could get ourselves to do. Looking back, it was a whisper from God telling us there is more to this story and it is not over yet.”

Thankfully Erica and Dan heard that whisper as their prayer for more time was about to be answered.  A few states away a stranger, another SMA mom, was about to learn about Ella’s story.  Sarah, proud mother of two boys and a daughter Stella (SMA Type1), received a message from a friend in California about a blog she had come across.  Because Sarah actively spreads awareness her friend knew she would want to read about this little girl in Illinois.  A woman was making purses from Ella’s dresses and wrote a blog about it.  Sarah contacted the woman and asked if it would be ok for her to speak to Ella’s mother.

Sarah’s fateful phone call to the Hunts came one day before their scheduled meeting with the funeral home, which was the 8^th of January.  Ella’s celebration of life was scheduled for the 15^th of January.  They wanted family and friends to celebrate her life while she was still with them although they had accepted that the funeral would follow shortly after. Erica refers to this incredible SMA ambassador, Sara Turnbull, as their personal angel.  She introduced them to her daughter Stella. Her (then) 5 year old SMA Type1 daughter.  5 Years old? She explained that there are options in care that can give a family more time.  Time is what the Hunt family was after so they listened intently to the information the doctors had failed to mention.  Sarah described a life that would not be easy, a life with lots of machines, but a happy life.  A life with potentially years, instead of only months with their daughter.  While there are no guarantees with anything, they wanted to try.  Sarah suggested they contact Dr. Schroth (SMA specialist) in Madison WI.  Sweet Stella proved to the Hunt family…

THERE IS HOPE

Erica writes about the days after that phone call:

“We called Madison directly the next day. Instead of planning a funeral we began planning her life. Instead of planning on her dying, we began to plan on her living. We made the trip to Wisconsin two weeks later and left shocked. Dr Schroth did not give us choices like IF you choose this, it was more like ‘so, you are here, and if you want more time, this is what we need to do.’  We left armed with resources and most importantly hope and a vision for her life.

On the second day of this SMA awareness month (August) Ella turned 2 years old.  A huge milestone for all SMA families.  Not only is she surviving but she is striving.  She has some speech, a huge smile, and an active lifestyle with lots and lots of “Dancing in the Rain”. So why do we need to spread SMA awareness?

Because families wanting more time should know ALL of the options.

Look at this smile.

CLICK HERE FOR VIDEO

SMA Awareness – Care Decisions (Type1)

Picture courtesy of SMA Awareness Ribbon

An SMA Type 1 diagnosis is devastating to say the least.  The doctor comes in and tells the parents their beautiful baby, the light of their life, the life they had so much hope for is going to be cut short.  It is hard enough to learn there is something, anything wrong with their precious angel but to find out something like an SMA prognosis is simply earth shattering.

THEN…These devastated parents are asked to make decisions no parent should ever have to make.  They are asked how much care they want to give their child.   They may even be told that there is no hope.  They may not be given any options at all.  They may be told to go home and simply enjoy the little time they have.  Others may be told the only way they will leave the hospital is to have a tracheotomy and not even be offered other options.

That is why awareness so very important.  

There are basically 3 options of care for an SMA Type 1 child:

*Palliative Care – Also called comfort care.  The child is kept comfortable with the use of oxygen and pain relieving medications until the time they receive their wings.

*NIV (Non InVasive) Respiratory Care – A Bi-pap machine is used to assist the child in breathing.  Several other machines are also used in conjunction with NIV:  Cough Assist, pulse-ox, feeding pump among others.

*Tracheotomy – Instead of a Bi-pap mask, a ventilator helps the child breathe through a tube attached to a hole in their throat tube which provides a direct path to the airway.  Most of the same machines are used as in NIV.

There are NO guarantees with any of the care levels.  Each and every child is different.  Parents need to be told that there are options.  They need to be filled with hope, not fear.  The fear will be there, it is inevitable.  We have lived with that fear every single day for the last 4 years. But because of all those great moments in between, the giggles and the milestones, we think more of life than we do of death.

Judging a situation is always easier the further away you stand.  Some would say that a parent choosing to do nothing doesn’t love their child or a parent choosing a trach is holding on too long.  Neither could be further from the truth.  The devastation that SMA forces on a family is harsh, no matter the length of life and no matter the decisions that are made.

Each family must choose what is right for THEIR family and THEIR child.  There were so many times I wished someone would have told us what was right for us.  We simply prayed for those direction and looked into Jadon’s eyes for answers.  We firmly believe the path we have walked was intended for US and JADON.

We would never dream of judging anyone’s decision, we don’t have the right and we certainly don’t have the authority.  What we want is for every family to know ALL of the choices for their newly diagnosed child.  Some doctors are uneducated in the disease and give no options and no hope.  Others may even know the options but decide on their own what is “right” for the family.  In their mind there is no quality of life for a child who cannot move a muscle.  Even medical professionals don’t have that authority.

So this is why we spread awareness, because knowledge is power.  If a family has all the information and decides that palliative care is right for them, we want to stand by them and help them “Dance in the Rain” through their shorter storm.

There are too many stories of families who were never given the options but wish they had been.  Sometimes, just sometimes, because SMA awareness is being spread, a family simply looking for more time with their beautiful daughter will receive a call.  A call from a complete stranger, an SMA Mom, who is the answer to their prayers…be sure to check out our blog tomorrow (Saturday) for this exact story.