Our SMA Family~JD's Birthday~Abilities Expo~Oh, and don't forget it's SMA AWARENESS MONTH!

"Dancing in the Rain"

"JD @ The Astrodome 

"known as the 8th Wonder of the World"

What an adventurous day yesterday was!

It could not have been any more Perfect for "Dancing in the Rain"! 

We set out to the Abilities Expo at the Reliant Center in Houston and JD couldn't enjoy the ride enough....

What a wonderful time we had, saw some old friends and met a few new ones along the way! JD can't wait to do it again next year! Way cool stuff they have there! Fell in love with all the cool vans we got to roll JD up into! Wish I could have just drove him home in one! LOL Anyway, we are doing our research and hopefully JD will be in his own van one day soon! 

Tuesday we will head to JD's yearly check-up with the docs! Not our favorite thing to do, but it has to be done! And then Saturday JD will be celebrating his 17th Birthday! WooooHoooo! Even as I write those words today I still can't believe it! My guy is such a fighter and I am so proud of him!

Take that SMA! 

When we got home last night I was excited to write something up and share with our family and friends, but when I got on the internet and started to catch up on every bodies day I realized there was an uproar in the SMA community again. Which really puts a damper on the end of the day. It just breaks my heart to see the SMA community break down and separate when we are all working on the same goal! The Cure! Only time will let you know, who you can trust in your life and who you can't! I do know and have seen with my own eyes that when we stick together things get done! When we stick together, we are a force that is unstoppable!  When we stick together "Our Kids" benefit!

Being a part of the SMA community for 17 years now I consider all of them my family and as you know, most of the time most families don't agree on everything! Especially money! I hate the fact that everything boils down to the money! Money truly is the root of all evil! We as an "SMA family" have collectively brought in the money that has been poured into research! Not just one person and not just one child! I do not know if there will be a cure in JD's life time, because as a parent I don't have time to sit in front of a computer all day long to do the research myself! We as a community rely on the proactive parents that do have that time and we trust them to share accurate info with us. When trust is broken and bully-ING takes place to strong hold money, that's when separation comes in and the community is left wondering who to trust. That Sucks for all of us and especially the KIDS! I don't want my SMA kid in the middle of a "deleting match" on FaceBook. Especially in his birthday week - in the middle of SMA AWARENESS Month. JD loves all of his SMA buddies and they do not deserve to listen to all of the political crap that goes on with all of the money that WE collect! I will continue to trust who I trust and YOU continue to trust who you want to trust, that is all we can do as a community! Put your money where you think you need to put it and I will put my money where I think I need to put it! If you don't agree with me then that is just fine and if you choose to delete me or my son from your friends list on FaceBook, then that's just fine too! We are not here to please everyone and I won't mind if you leave!

JD and I have been waiting on "THE CURE" for 17 years now and like I said earlier, I DO NOT know if there will be a Cure in his life time....but in the last 17 years we have met some wonderful friends (family) along the way! We will continue to support the kids and the needs of the kids today!

To me nothing matters more then the Kids! We can't afford to "Not" stick together! Our Kids Can't Afford It! I know that as individual families we are all fighting for our kids to have the best life possible while living with SMA  and "WHILE WAITING FOR THE CURE". I hope one day we will all be able to come together again and realize this is just another "proverbial storm" that we TOGETHER over-came!

I will not continue to ask my family and friends to pour their money into any organization/fundraising/charity supporting any form of research funding! We will continue to try to give you the latest and up to date information we can find about Research in the community. The kids need things today and we all need help with getting those things, some of us a little more then others! I hope to be able to bring us together and let people know about what our kids need today and not just about the research for tomorrow! I know that this will get me deleted from some of the SMA community who think they have "control" over them being a part of  "A CURE for SMA"!

I am tired of pouring our money into something they say is coming soon, but when "soon" gets here, there will be another road block and more money to be had!

Which brings me right back to "Dancing in the Rain"!  The Storm is SMA! and this is how TEAM JD will be dancing in the rain.

Please watch  TEAM JD KIDS FOUNDATION at www.team-jd.com for BIG CHANGES TO COME! and I encourage you to put your money where you feel it needs to be!

I hope you enjoy the rest of the pictures of our SMA family "dancing in the Rain". 

 

These are just some of the pictures we got of yesterday, if you would like to see more then please follow the link here...https://www.facebook.com/media/set/?set=a.460185544015481.101865941.100000721187568&type=3

And please don't forget about JD's birthday coming up next week. If you would like to join us for a day in the sun while we Dance in the Rain, then we will see you out at Moody Gardens. You can read all about that over here at this link...http://jdsmajourney.blogspot.com/2012/07/jds-birthday-august-11th.html

This will conclude Day 4 and 5 of SMA AWARENESS MONTH!
Love,
Rhonda 
SMA Mom to
JD Manuel - 17 years old - type I SMA!

JD's Birthday ~ August 11th ~ Dancing in the Rain

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!

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!

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

The party we have every year takes a great deal of money and effort from many people to put together. Money and effort that is just NOT There on MY PART this year! This year has not been one of our best! Summertime is always so busy for us with JD and now that he is a young man his wants and needs have changed greatly over the years. It was so much easier when he was just a little guy---oh how I miss those days!

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

Mam~ma's surgery, PLEASE keep her in your prayers!

**** Tuesday 7-3-12

Final Update!
Mom is home! and it has been a very long day!
Thank you for all the prayers, messages, phone calls, e-mails and well wishes for Mom! We certainly appreciate them! She is doing great and is expected to make a full recovery and be healthier then ever!
Great job Mom, we knew you had this!
I LOVE YOU, MOM!
your FAVORITE daughter!
 =-)
Rhonda Renee



*** Monday 7-2-12
Update: Day 6 -
We (Mag's, Lil'Man, Aunt Lene & I) visited Mom (&Dad) today and she sure looked great, up walking around and doing wonderfully! Thank you again for all your prayers, we surely appreciate them greatly!
We are a little disappointed that she won't be coming home tomorrow but we are still shooting for this week! Please send healing prayers so we can have her back home by the end of the week!
She got a big kick out of her eCard Greetings  ;-)
you can still send one to make her smile use this link here...
https://www.stlukeshouston.com/Forms/egreeting.cfm  ...room 1127 - Joan Spain.
Thanks again for all the prayers, I so appreciate it!
Rhonda



**** Saturday 6-30-12
Morning Update:   Day 4 -
I talked to Mom this morning and she sounds much better! She is still in a lot of pain of course and her O2 was a little low, so they have her on 1 liter O2 for now and did an x-ray at 5 am. She has been doing everything they ask of her because she wants to get home so bad! She told me she keeps thinking about JD and that if he could put up with what he puts up with on a daily basis, then she could do it too!! She was so happy to see Meghan last night! Thanks Meghan for going to check on her and Pops! JD is so mad because I won't take him to go see her. But I refuse to take him into a hospital unless he has to go! He will get to talk to her tonight on the phone, that will have to do until she's home!
Keep the prayers coming for her please. We need her Home and Completely Healthy!!!!
Don't forget to send her an eCard Greeting at this link...
https://www.stlukeshouston.com/Forms/egreeting.cfm  ...room 1127 - Joan Spain.
Thanks again for all the prayers, I so appreciate it!
Rhonda


*** Friday 6-29-12
Update:   Day 3 -
Mom is still in a lot of pain today, but on the road to recovery! We certainly appreciate all your prayers and well wishes. Please keep them coming! She is in her own room finally and dad is still with her.  She is in the Texas Heart Institute in Houston at St. Luke's - tower room 1127 - and you should be able to reach her or dad at 832-355-2414. You can also send her an eCard Greeting at
https://www.stlukeshouston.com/Forms/egreeting.cfm
all you will need is her name Joan Spain and room #1127 tower. I am sure that would put a smile on her face! They are saying she can be out of there as early as Tuesday, please pray that happens for her! We need her well and back at home!
Thanks again for all the prayers! Rhonda


*** Thursday 6-28-12
Update:  Day 2
Mom remained in the ICU today, but will move to the floor sometime tonight! She did sit up in the chair today! Thank you so much for keeping her in your prayers! She is in a lot of pain today, hoping that passes quickly for her and her recovery goes as smooth as possible! Dad will remain with her til she comes home. I should have a number you can reach her tomorrow sometime!
Thanks again for all the messages, I REALLY appreciate them!
Rhonda

***
Update:  7:30pm-
I talked to Mom on the phone at 7:15. She is in a lot of pain but said she promises to rest! She will remain in the ICU til at least Noon tomorrow! Thank you for all of your prayers, we Really needed them today and Mom is on her way to feeling much better! Thank you again! Please keep her in your prayers this week for a continued speedy recovery! I will update again tomorrow evening after I leave the hospital and she is in her own room! Thanks for the calls and all the messages, I really appreciate them!
Rhonda
ps. this mama is tired!

**
UPDATE: 5pm-
The plan is to take Mom off the breathing machine with in the next 2 hours. She is off the sedation medication and is trying to wake up. She will remain in the ICU tonight and hopefully be in her own room tomorrow sometime! PLEASE Keep Her in Your PRAYERS Tonight! PLEASE PRAY FOR A SPEEDY RECOVERY! I appreciate all your prayers for her and our family!
It's been a very long day!!!
Rhonda


 ***** Wednesday 6-27-12
Good morning everyone, Rhonda here.
Small post before I head out to the hospital. No it's not JD going in, it's my Mom (Mam~ma).
Yes, she is having surgery today, open heart surgery. and yes she is in Houston!
We sure don't mind your extra prayers today for her!
I will keep everyone posted on her condition as soon as I know! Dad will be there at the hospital with her for the duration. So if you can't get a hold of him, you can call me or Mag. If I don't answer my cell please leave me a message, I will call you right back!
Thanks for your prayers!
Rhonda
(409)392-7014

I LOVE YOU MOM, WISHING YOU THE FASTEST RECOVERY EVER! and JD says he will see you when you get home and that he loves you to infinity and beyond!!!!

Team JD "Giveaway #2" ~ Calling All "KIDS"

***UPDATE: THE WINNERS ARE:**
This Giveaway is now over, we can not thank you enough for your support!
To claim your t-shirt we will need you to message us here on FaceBook or send us an email at bubba@team-jd.com with your shipping address and a size t-shirt that you would like. Again we thank you for helping us spread awareness about SMA, Hydrocephalus, Vents and Trachs!
Now here are the winners >>>

SMA KIDS >   Madyson Hopkins  &   Ayden (?),
HYDRO KIDS >  Emily LeSueur   &   Rhema Godwin
TRACH KIDS >  Alli Williams   &   Anthony Villavicendo
VENT KIDS >  Stella Turnball   &   Landon Knight

$50.00 Gift Card >>  Emily LeSueur

Don't forget about our iTunes gift card giveaway on the Giveaway Tab, there is still time to enter there.
We sure hope you enjoyed our Giveaway and look forward to seeing you again for our next Giveaway!
Please continue to share Team JD with your friends.  www.team-jd.com
Next up >
AUGUST is SMA AWARENESS MONTH  and
SEPTEMBER is HYDROCEPHALUS AWARENESS MONTH
Are you guys ready???

Thanks again and Have a great weekend
JD



**UPDATE: 7/6/2012:**
Hi everyone, my apologies for the delay on our Giveaway.
We are going to extend our giveaway here until 9:00 am tomorrow morning 7/7/2012(central time).
This last month was very busy for many families traveling to and from annual Conferences ,( Families of Spinal Muscular Atrophy Annual Conference and the National Hydrocephalus Awareness Day on Capitol Hill)and many Kids in Camp. We would like to make sure that everyone knows about the giveaway and give them a chance to enter. So I beg you to please share our Giveaway today or just enter your"SMA KIDS", "HYDRO KIDS", "TRACH KIDS", AND "KIDS WITH VENTS" friends name below. We appreciate your support. We will be back tomorrow morning with the Winners! Good Luck and thank you for sharing your Child with us!
Spreading Awareness the Team JD way!

JD and Rhonda

 *********
Are you guys ready for our next giveaway??  We are finally!

But first I have to thank our sponsors for giving us these cool gifts as Giveaway prizes! My Mam~ma & Pops gave us the $50.00 WalMart Card for the last Giveaway! Mam~ma's & Pops' always Rock, don't they!! I have the very best`est Mam~Ma & Pop in the whole wide world, I Love You guys and thank you again for being "Team JD's #1 fans"! The new prizes are from an anonymous donor and I can't thank them enough either! You guys ROCK!
OK so now to the Giveaways!  YES... you read that right! I said GIVEAWAYS!! We have two (2) giveaways going on right now! Hope you all join in the Fun!

...So here are the details....

Giveaway #1   at link : Team JD on FaceBook
https://www.facebook.com/notes/team-jd/team-jd-kids-foundation-t-shirt-giveaway-5000-gift-card/319926348093004

Mom and I have been working getting ready for SMA AWARENESS MONTH in August (and that happens to be my BIRTHDAY!!!! WooHoo!!) and HYDROCEPHALUS AWARENESS MONTH in September! So stay tuned we have fun things coming and lots to share with you and the Kids!
Right now I have t-shirts to giveaway! who wants one??
enter your "KIDS" today....
"SMA KIDS", "HYDRO KIDS", "TRACH KIDS", AND "KIDS WITH VENTS"
open to all "KIDS" (0yrs-100yrs) just enter your Kids NAME and AGE and then tell us if you are a...
"SMA KID", "HYDRO KID", "TRACH KID", or "KID WITH a VENT"!
1 Girl Winner (pink/purple shirt) and 1 Boy Winner (blue/green shirt) for EACH!
(*that means 8 Winners total*) Winners will be selected using random.org. and
the "Kid" with the most "Likes" will win a $50.00 Gift Card of Their Choose!
(iTunes, Target, WalMart, SMA Supply, or where ever they choose!)(one winner)
*kids names should only be entered once, duplicates will be removed.
Enter your kids name today at link * https://www.facebook.com/notes/team-jd/team-jd-kids-foundation-t-shirt-giveaway-5000-gift-card/319926348093004 * (not the post). and then share with your friends so they can "LIKE" your child's name.

Winners will be selected at 12 NOON(Central time) on July 4th, 2012.
We thank you for your support and appreciate your help! 

Hope everyone has a Great week! 

JD

ps: it would be nice if you could thank our donors as well in your post, because they are reading and enjoy meeting all of you guys!! You make them Smile! Thanks again!

Giveaway #2 :     below

Please share with your friends!!! Thank You!

a Rafflecopter giveaway

Team JD Giveaway Winner!!!

AND THE WINNER IS >>>> Bobby N Mariah Beatty CONGRATULATION! Please contact JD with your address so we can send your prize! and THANK YOU everyone you joined us for our first Giveaway! Stay tuned for our next Giveaway ~ coming very soon! ;-) a Rafflecopter giveaway