HI everyone,
As most of you know by now JD's birthday is coming up very soon and if you are friends with me or JD on FaceBook you should know already that August is National Spinal Muscular Atrophy Awareness Month! AND August 11th is International SMA Awareness Candle Lighting Day/Evening! August 11th is JD's Birthday!
In January of 1996 doctors told me that JD would probably die before the end of that year! He had SMA. He was only 5 months old! SMA is a death sentence!
August 11th at 2:03pm JD will be seventeen (17) years old!
Take that SMA!
August 11th at 2:03pm JD will be seventeen (17) years old!
Take that SMA!
Every year we throw a big party for JD on his birthday to celebrate his life! This year we were on the same track for the same plan, Big Party for JD's 17th birthday! But things change quickly around here, we are a SMA Family and things don't always go how they are planned. So this year we are doing things a little bit different. You can still come and see JD on his birthday and celebrate with him; but we won't be having a big party at the house with a band, food, giveaways and raffles!
All year long we try to advocate as much awareness as we can about SMA and point people in the direction of organizations that we know would benefit the kids NOW! We also try to point people in the direction of SMA research that would benefit JD's friends that are born with SMA today! With that said, yes we try to collect money all year long for JD and his friends! And this year is no different!
All year long we try to advocate as much awareness as we can about SMA and point people in the direction of organizations that we know would benefit the kids NOW! We also try to point people in the direction of SMA research that would benefit JD's friends that are born with SMA today! With that said, yes we try to collect money all year long for JD and his friends! And this year is no different!
The big party that we throw every year is to collect money for JD for the things he wants and somethings he needs. We have collected money over the years to help me as his mother buy things non-medical like his generator(s), (I have purchased 4 in JD's lifetime). We have been blessed over the years to get funding for JD on other medical supplies he uses, but there are many things that he needs that funding will not pay for.
And now that JD is a young man, getting funding for some of the things that he needs is getting even harder! This is one of the reasons we will be doing things different this year for JD and his friends on his birthday!
Some of you know how I transport JD and some of you have no clue! I have always been afraid to tell people how JD gets to where he is going! Why? because we live in Texas and if I ever had a wreck with him in the car, then the state of Texas would probably put me under the jail! Can you imagine me getting pulled over (for some reason), I picture the cop standing there, starring and thinking she has got to be braking some law, she is transporting a child on life support, in the front seat of a car (that is not safe for him) and she is carrying oxygen tanks that could blow up, if someone hit her or if they hit someone. She Has Got to be Braking Some Law! Then I picture the cop calling in EMS, to take JD to who knows where and me being detained for who knows how long! Just my fear, call me crazy! I have never let anyone drive while JD is in the car, I have never been able to bring myself to let someone else take that responsibility! So here is my confession, I drive a Honda Element and JD rides shotgun every-time he leaves the house! Yes I put him in the front seat and we go!
As you can see this is not going to work any more! JD is just to big of a guy to be throwing him in the front seat and going! I have to make changes for him and very soon!
We are looking for a van for JD, a van where he can stay in his wheelchair and still ride in the van! A Medically equip van! There is NO FUNDING for this for anyone! That is where you come in! If you could help in anyway, it would be greatly appreciated!
But JD is not the only one with this problem, there are many kids out there that need help getting funding on this level. That is where Team JD comes in! Team JD would like to point you in the direction where the kids need you the most!! Please watch for updates thru out the month of August on JD's website to see where you can help out the most!
Team JD Kids Foundation / www.team-jd.com
But JD is not the only one with this problem, there are many kids out there that need help getting funding on this level. That is where Team JD comes in! Team JD would like to point you in the direction where the kids need you the most!! Please watch for updates thru out the month of August on JD's website to see where you can help out the most!
Team JD Kids Foundation / www.team-jd.com
So with all of that said, (what a mouth full...lol), here is how YOU can help celebrate JD's Birthday with All his Friends!
--------
For those of you that were expecting to come and have a great time on
JD's birthday with him, like I said earlier-you still can.We will be taking JD to the Moody Garden Pyramids on Galveston Island on August 11th for his birthday! Moody Gardens Galveston Island / www.moodygardens.org/ . He has never been there, even tho we live so close. So we think it's time to go! JD will get to see "Batman: The Dark Night Rises" on the largest 3D screen in Texas, in the Discovery Museum he will get to see "Bodies Revealed" http://www.bodiesrevealed.com/, and hopefully we can get him on the Colonel Paddlewheel Boat to sail around Galveston Bay. He will also get to visit the Aquarium Pyramid and the Rainforest. Bands on the Sand planned for that night at 6pm and a Fireworks show afterwards. I will be bringing our candles to light and spreading awareness to whom ever we meet on JD's big day! I'm thinking, what a great way for JD to spend his 17th birthday! If you would like to see JD on his birthday and help him celebrate, then we will meet you out there!
One of JD's friends, Jandon (Bug) over at Jadon's Hope Foundation has a great motto...
“Life is not about waiting for the storms to pass,
It is about learning to dance in the rain.”
I too have latched on to this saying over the years and literally "danced in the rain with JD" and insisted that JD will have as many life experiences as he can! Me, not having a van for him is not going to keep us grounded to the house this summer. August will be a busy month for us. Our plans include the Abilities Expo at the Reliant Center in Houston on the 4th/ http://www.abilitiesexpo.com/houston/v.html, yearly doctor appointments on the 7th and of course JD's Birthday on the 11th! Then we will have another wheelchair fitting at the end of August. September will be just as busy with National Hydrocephalus Awareness Month, Bowling for a Healthy Brain, Striking Out Hydrocephalus Event and Aunt Shannon's wedding.
So we ask of YOU, for your help again this year for JD's birthday. Because we think JD's 17 years here on earth is worth celebrating with all his friends that live with Spinal Muscular Atrophy or Hydrocephalus Everyday!
Here is the list of things you can help with for JD's 17th Birthday ~
Get Involved One Way or Another!: below you will find a group of "AMAZING" Kids with links to their websites! Click on their links! Share them! Spread the word!
They Stand Together to Move Forward!
...and if you could find it in your heart to help any of them "Dance in the Rain" every once in awhile, I would be forever grateful!
August National SMA Awareness Month:
for the month of August watch JD's website and learn where you can help out the most! www.team-jd.com
SMA Awareness & Groundbreaking Research:
B4SMA ~ Blankets for Spinal Muscular Atrophy Kids-
http://www.our-sma-angels.com/b4sma/ , http://www.zazzle.com/b4sma_kids
Miracle for Madison & Friends ~ Fight Cure SMA-
http://www.miracleformadison.org/ , http://www.zazzle.com/miracleformadison,
SMA it Forward with Cashel- http://www.smaitforward.com/
Marshall's Miles- http://marshallsmiles.com/
Sophia's Cure Foundation- http://www.sophiascure.org/
Avery's Bucket List- http://averycan.blogspot.com/
Getty Owl Foundation- http://gettyowl.org/
Hope for SMA- http://www.hopeforsma.org/
Team Ben Charity- http://www.team-ben.org/
Fight SMA- http://www.fightsma.org/
Emerson's Hope Foundation- http://home.emersonshope.org/
Families of SMA- www.curesma.org
SMA Space- www.smaspace.com
Jadon's Hope Foundation- http://jadonshope.wordpress.com/2012/07/23/dance-in-the-rain/
Team JD Kids Foundation- www.team-jd.com
We Need YOU right now: www.team-jd.com/events.html
I can't thank you enough for celebrating JD's birthday with us again this year!
Rhonda
One of JD's friends, Jandon (Bug) over at Jadon's Hope Foundation has a great motto...
“Life is not about waiting for the storms to pass,
It is about learning to dance in the rain.”
I too have latched on to this saying over the years and literally "danced in the rain with JD" and insisted that JD will have as many life experiences as he can! Me, not having a van for him is not going to keep us grounded to the house this summer. August will be a busy month for us. Our plans include the Abilities Expo at the Reliant Center in Houston on the 4th/ http://www.abilitiesexpo.com/houston/v.html, yearly doctor appointments on the 7th and of course JD's Birthday on the 11th! Then we will have another wheelchair fitting at the end of August. September will be just as busy with National Hydrocephalus Awareness Month, Bowling for a Healthy Brain, Striking Out Hydrocephalus Event and Aunt Shannon's wedding.
So we ask of YOU, for your help again this year for JD's birthday. Because we think JD's 17 years here on earth is worth celebrating with all his friends that live with Spinal Muscular Atrophy or Hydrocephalus Everyday!
Here is the list of things you can help with for JD's 17th Birthday ~
Get Involved One Way or Another!: below you will find a group of "AMAZING" Kids with links to their websites! Click on their links! Share them! Spread the word!
They Stand Together to Move Forward!
...and if you could find it in your heart to help any of them "Dance in the Rain" every once in awhile, I would be forever grateful!
August National SMA Awareness Month:
for the month of August watch JD's website and learn where you can help out the most! www.team-jd.com
SMA Awareness & Groundbreaking Research:
B4SMA ~ Blankets for Spinal Muscular Atrophy Kids-
http://www.our-sma-angels.com/b4sma/ , http://www.zazzle.com/b4sma_kids
Miracle for Madison & Friends ~ Fight Cure SMA-
http://www.miracleformadison.org/ , http://www.zazzle.com/miracleformadison,
SMA it Forward with Cashel- http://www.smaitforward.com/
Marshall's Miles- http://marshallsmiles.com/
Sophia's Cure Foundation- http://www.sophiascure.org/
Avery's Bucket List- http://averycan.blogspot.com/
Getty Owl Foundation- http://gettyowl.org/
Hope for SMA- http://www.hopeforsma.org/
Team Ben Charity- http://www.team-ben.org/
Fight SMA- http://www.fightsma.org/
Emerson's Hope Foundation- http://home.emersonshope.org/
Families of SMA- www.curesma.org
SMA Space- www.smaspace.com
Jadon's Hope Foundation- http://jadonshope.wordpress.com/2012/07/23/dance-in-the-rain/
Team JD Kids Foundation- www.team-jd.com
We Need YOU right now: www.team-jd.com/events.html
I can't thank you enough for celebrating JD's birthday with us again this year!
Rhonda
No comments:
Post a Comment
Thank you for your input! We appreciate your awareness in our personal blog! We would like to ask you to please get involved anyway you can! CURE SMA!
Thanks again,
Team JD