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to MJ's Update Web Page. It has been provided to keep people updated about MJ and her travels and health. MJ has Spinal Muscular Atrophy, Type 1. To learn more about SMA please visit SMA Support
If you want to support fundraising for SMA, please visit Marshall's Miles , Payton's Pals, FightSMA, SMA Foundation , Miracle for Madison and Friends , SMA Support, or Connecticut Chapter of FSMA !! Thanks!
MJ also received a beautiful cross stitched quilt from Cole's quilts ! If you know how to cross stitch or know someone who does, and have time, please volunteer to do a quilt square for one or more of the kids!
Want to view more pictures of MJ??
Visit MJ's Picture Page
MJ's other webpages are
MJ's page at Our-SMA-Angels
Check it out!
MJ has started her own organization. It is for children who have been diagnosed with SMA. Please visit B4SMA or the B4SMA Journal if you wish to know more about the organization! Thank you!
Check out MJ's friends page to visit MJ's friends!
Please check out Our-SMA-Angels to see more MJ's friends with SMA!
My Wish
Rascal Flatts
I hope that days come easy and moments pass slow,
And each road leads you where you want to go,
And if you're faced with a choice, and you have to choose,
I hope you choose the one that means the most to you.
And if one door opens to another door closed,
I hope you keep on walkin' till you find the window,
If it's cold outside, show the world the warmth of your smile,
More than anything, more than anything,
My wish, for you, is that this life becomes all that you want it,
To your dreams stay big, and your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.
I hope you never look back, but ya never forget,
All the ones who love you, in the place you left,
I hope you always forgive, and you never regret,
And you help somebody every chance you get,
Oh, you find God's grace, in every mistake,
And you always give more than you take.
Oh More than anything, Yeah, and more than anything,
My wish, for you, is that this life becomes all that you want it,
To your dreams stay big, and your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.
I dedicate the following song to Emma Clare, Forever 3 years old! Love you!
If Heaven
By: Andy Griggs
If heaven was an hour, it would be twilight
When the fireflies start dancin on the lawn
And suppers on the stove and mammas laughin
And everybody’s workin day is done
If heaven was a town it would be my town
Oh…on a summer day in 1985
And everything I wanted is out there waiting
And everyone I loved is still alive
Chorus:
Don’t cry a tear for me now baby
There comes a time we all must say goodbye
And if that’s what heavens made of
You know I, I ain’t afraid to die
If heaven was a pie it would be cherry
So, Cool and sweet and heavy on the tongue
And just one bite would satisfy your hunger
And there’d always be enough for everyone
If heaven was a train it sure would be a fast one
that could take this weary traveler round the bend
if heaven was a tear it'd be my last one
And you’d be in my arms again
Chorus:
Don’t cry a tear for me now baby
There comes a time we must all say goodbye
And if that’s what heavens made of
You know I, I ain’t afraid to die
Yea, if that’s what heavens made of
You know I, I ain’t afraid to die…
give MJ more *HUGS*
Get hugs of your own
The first song playing goes with the current update.
Each week, I will dedicate the song to someone or something,
This week it is dedicated to living life to the fullest
Don't Forget to
 
Journal
Friday, August 22, 2008 6:36 PM CDT Camping, Fried Face, Coffee, and Arm Issues
Hi everyone:
Sorry for the lack of updates this summer. Lack of internet sure is a bummer. I can’t get on dial-up and can’t even get a wireless connection anywhere. Right now I’m enjoying dinner and free WiFi at Panera (I think I’m addicted to the frozen Caramel coffee). I cannot wait to go home so I can go online and get some website work done. I will also be working on doing the 2009 SMA Calendar, so I will let you know when it is up and ready.
I have been so busy that I have gotten up almost every day and have kept busy. I have seen the doctor many times, trying to get an answer to my arm pain. I have seen the neurologist, who didn’t think it was nerve pain, so I was put on a lidocaine patch, which made my pain much worse. So then it was Tegratol, which made me cross-eyed and unable to focus at all. Now it is Lyrica. I am hoping that I have no horrible side effects from this one. I am also having a lot of blood when suctioning , so we did a trach culture to see if there is something hiding in there.
Dr. Bach was good. We had a good visit and it was worth it to get him up to date with everything that happened this past year. We talked about trachs and NIV. I’m just glad that I did make the decision and am happy with it but am so glad that with Dr. Bach’s help, I was able to go 14 years using NIV.
I have also had a trial with a Dynavox System. I really enjoyed using it and can’t wait to get my own. Early mornings and late evenings are hard on speaking so the Dynavox will be a great help during those times and others.
Camp Harkness was awesome. I had a great time and it was great to see everyone again and spend a week of just having fun! I got burnt, of course, despite sunscreen, but am feeling better now. Mostly just my face! All week, we went shopping, ate out, hung out at the beach, met new friends, and had a multi-c olored bonfire. The weather was great and not too hot at all. I enjoyed the colored bonfire and hanging out with friends at the beach and the mashed potatoes. Once I get access I will work on sending a montage, but for now, you will just have to deal with this http://www.facebook.com/album.php?aid=54374&l=6f632&id=769097805
Sunday, July 24th is SMA Day at Shea Stadium. The New York chapter of FSMA is hosting the day and I am so excited to finally meet Dylan C. I can’t wait to meet his friends too and make new friends.
Now I’m asking for your help on somethings…
Please take a minute (literally) to nominate "Cure SMA" for the $2.5M American Express Members Project. If successful, the project funds would be used to further research towards taking that last critical step in finding a treatment and/or cure for SMA.
The "Cure SMA" project is currently 15th out of over a thousand projects, but it needs more support by September 1st to get to the next round.
YOU DON'T HAVE TO BE AN AMERICAN EXPRESS CARDHOLDER OR MEMBER TO NOMINATE THE PROJECT.
You can nominate the "Cure SMA" project by clicking on the following link - http://www.membersproject.com/project/view/ZTSYI1
Also, there is currently a petition going around started by Bill & Victoria, mom and dad to Gwendolyn, to help get legislation passed to accelerate to research and study for a cure for this disease. It can be found at http://www.petitiontocuresma.com/
Researchers are very close to finding a cure, but at the moment it is unlikely they will find one in time to help kids living today. If this legislation is passed, there is hope that a cure will come sooner, in time to save thousands of other children who are fighting, or will be fighting this disease in the future.
I am asking that you please take the few minutes needed to sign this petition. It is very important that we put pressure on our representatives to fight for this legislation, and the more people who sign, the better. The goal was 10,000, but was reached so quickly that it has been increased to 50,000! It is already making a DIFFERENCE in Congress, but they need more support! Please SIGN the petition then PASS this petition on to ANYONE you think will help by signing. I will also be personally contacting my local representatives to support this cause.
I thank you from the bottom of my heart for your help. It means so much to me to be able to do something to help these children who can't help themselves. Please let me know if you have any further questions.
MJ
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