For more pictures of this amazing day visit the facebook page of our amazing photographer Shauna Renee Photography – CLICK HERE
For more pictures of this amazing day visit the facebook page of our amazing photographer Shauna Renee Photography – CLICK HERE
Jadon is 6 years old…plus a few weeks.
Jadon turned six on the 25th 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.
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 1st 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.
WRITTEN BY AMY VRBAN
Race Director – Jadon’s Hope BUG RUN
I have greatly enjoyed seeing everyone’s pictures from the Bug Run yesterday! It helps me see all I miss and see the enjoyment that was truly had at this event! I was overcome with great emotion at several moments. Moments I could talk about all day, moments I will never forget, and some so powerful no words are required.
SMA. I never knew how much those 3 little letters would impact a life. In return the impact that life would have on an entire community. Jadon. I was asked 4 times yesterday why I think Jadon has surpassed life expectancy. I don’t have the answer. Certainly not medically. What I see is a beautiful child who teaches us to love one another, encourages us to come together and help each other. To help each other beyond our own friendship and boundaries. Jadon has brought a community together to fight for all childhood diseases. He shows us how to live without giving up hope and beyond limits. To live each day and be thankful for it. Because of Jadon new friendships and bonds have been made. More and more people everyday are seeing the effects of SMA and ways they can help a devastating, terminal disease, come to an end. Jadon’s hope. His parent’s hope. His family’s hope. My hope. Friend’s hope, our committee’s hope, the community’s hope, hope across the country, hope around the world. It’s spreading and everyone can help!
Jadon’s parents have an endless love and passion for their children which has spread into the Foundation. Inspiring and infectious. Their kindness, love, passion, and dedication will touch your heart and soul.
I am thankful for every single person who registered and gave their money to such a wonderful cause! I am thankful for the silent donations and those who continually want to give! Thank you to all our sponsors who are new and have given to the Bug Run for the 3rd year! We couldn’t do it without you! It’s overwhelming to say the least. People helping other people!
Spreading HOPE and awareness! I am blessed to have a wonderful committee who share the same passion! They are an amazing group of people who work so hard in different areas and in different ways but they all give all they have.
Every single volunteer! Over 150 volunteers came out to help and gave their time to help make this, a fun, safe, and enjoyable event. Thank you!
Pictures from the event will be posted in the next couple of days and I’ll keep you posted on that!
We look forward to the 4th annual Bug Run in 2016! Fun things are already being planned!
Look for us in the Old’s Settler’s Day parade in September! We’ll have the Bug Run date set! Please visit http://jadonshope.org to keep up with the latest news and happenings with Jadon and the Foundation!
In the mean time keep hope alive, keep fighting and running!
And remember; when your legs get tired, run with your heart!
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.
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
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.
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:
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 1,826th day of changing our lives for the good.
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 5th Birthday Jadon!!! We love you so incredibly much and are immensely proud of you. You are our light, our inspiration and our hope.