THIS IS IMPORTANT.
This is what the Christmas season is really about. Giving from your heart to someone that needs it...
I recently came to know a little girl in my life that has SMA, Spinal Muscular Atrophy. Knowing a child with this condition can really touch your heart. She can't talk, walk, move, or play. But when you just hold her hand and talk to her it doesn't matter that she can't talk back. She smiles, and that's all you need to know that she understands. She can't talk, but she can feel.
Her parents can feel, also. They feel fear and sadness every time they remember that there's no cure for this condition. They feel worry and panic every time another bill comes in for her health care, her nursing dues, or her medical equipment that their daughter NEEDS to live. They don't get a choice in these things. They have to go into debt just for their daughter to survive. She has monitors of all sorts that keep tabs on everything and though it worries everyone when one starts beeping or going off to alert them that something is wrong, they're still in need of them.
They have friends from the children's hospice where they live that they can talk to about the condition because their children have the exact same problem. They organize parties and "play dates" with the other children and their parents. While that helps the emotional worries a little, it doesn't help the financial situation they're in. And this is what brings me to the subject of my post.
I saw a bulletin posted on Myspace today about a child with the exact same condition. Because I've been touched by it myself in my own life I feel that much more obligated to spread the word, not just for the child in need but in honor of the ones I've already met.
The following is the bulletin I found:
__________________________________________________________________
Hello friends,
We've recently found out some horrible news....J. Robbins (Jawbox, Burning Airlines, Channels) and his wife Janet's son was recently diagnosed with an incurable condition.
J. and Janet’s baby boy Cal was born with a serious genetic condition called Spinal Muscular Atrophy. Though there is no cure for this condition, there are lots of treatments that promise to give Cal the the best possible quality of life. Unfortunately, many of these, especially the alternative treatments, are not covered by health insurance.
J. and Janet have given so much over the years to the music community we're all a part of, so we are hoping you can see in your hearts to help them out now.
There is a website up with more information and a place to make a donation. All of the money will go straight to J. and Janet to help defray their growing medical bills.
Thanks for your support and feel free to send this bulletin on to folks who might likewise be interested in helping.
Please spread the word and donate if you can!
http://www.desotorecords.com/cal/index.shtml
xo SC
________________________________________________________________________
This is the first public entry I have made in a LONG time and it's not without reason. I really don't care if anyone reading this loves me or hates me. Some of the things I've been going through in life lately (including meeting SMA children) have taught me that there are more important things to worry about. Therefor, I put this entry where ANYONE can see it. As I said, I don't care if you love me or hate me, don't let it effect whether or not you help this child. I'm just the messenger and all I can do is hope that hearts will be open enough to help him.
I know that for every person that gives to help Cal, I will be thankful every time I visit little Lillian also and see another smiling little face just like Cal's. If they can't run, jump, skip, play, have sleepovers with friends, or even tell jokes in their lifetimes at least someone will help them have a better, more comfortable life doing all the things that they CAN do. They're immobile, not ignorant. These children do still understand what's going on around them and wouldn't you like to know that maybe one day when they smile it could be made possible with your help? Please give. I know all of you are going out and buying ridiculous things this season you don't really need or getting gifts for people you don't really want to be buying anything for. Put that money towards something WAY more special.
Once again, that link is http://www.desotorecords.com/cal/index.shtml . Not only can you donate from that link but you also can learn more about this condition. I thank you in advance for any money you donate, even if it's not that much at all. It means a whole lot to a parent that will just get to spend what time they will have with their child and not have to worry about money.
I recently came to know a little girl in my life that has SMA, Spinal Muscular Atrophy. Knowing a child with this condition can really touch your heart. She can't talk, walk, move, or play. But when you just hold her hand and talk to her it doesn't matter that she can't talk back. She smiles, and that's all you need to know that she understands. She can't talk, but she can feel.
Her parents can feel, also. They feel fear and sadness every time they remember that there's no cure for this condition. They feel worry and panic every time another bill comes in for her health care, her nursing dues, or her medical equipment that their daughter NEEDS to live. They don't get a choice in these things. They have to go into debt just for their daughter to survive. She has monitors of all sorts that keep tabs on everything and though it worries everyone when one starts beeping or going off to alert them that something is wrong, they're still in need of them.
They have friends from the children's hospice where they live that they can talk to about the condition because their children have the exact same problem. They organize parties and "play dates" with the other children and their parents. While that helps the emotional worries a little, it doesn't help the financial situation they're in. And this is what brings me to the subject of my post.
I saw a bulletin posted on Myspace today about a child with the exact same condition. Because I've been touched by it myself in my own life I feel that much more obligated to spread the word, not just for the child in need but in honor of the ones I've already met.
The following is the bulletin I found:
__________________________________________________________________
Hello friends,
We've recently found out some horrible news....J. Robbins (Jawbox, Burning Airlines, Channels) and his wife Janet's son was recently diagnosed with an incurable condition.
J. and Janet’s baby boy Cal was born with a serious genetic condition called Spinal Muscular Atrophy. Though there is no cure for this condition, there are lots of treatments that promise to give Cal the the best possible quality of life. Unfortunately, many of these, especially the alternative treatments, are not covered by health insurance.
J. and Janet have given so much over the years to the music community we're all a part of, so we are hoping you can see in your hearts to help them out now.
There is a website up with more information and a place to make a donation. All of the money will go straight to J. and Janet to help defray their growing medical bills.
Thanks for your support and feel free to send this bulletin on to folks who might likewise be interested in helping.
Please spread the word and donate if you can!
http://www.desotorecords.com/cal/index.shtml
xo SC
________________________________________________________________________
This is the first public entry I have made in a LONG time and it's not without reason. I really don't care if anyone reading this loves me or hates me. Some of the things I've been going through in life lately (including meeting SMA children) have taught me that there are more important things to worry about. Therefor, I put this entry where ANYONE can see it. As I said, I don't care if you love me or hate me, don't let it effect whether or not you help this child. I'm just the messenger and all I can do is hope that hearts will be open enough to help him.
I know that for every person that gives to help Cal, I will be thankful every time I visit little Lillian also and see another smiling little face just like Cal's. If they can't run, jump, skip, play, have sleepovers with friends, or even tell jokes in their lifetimes at least someone will help them have a better, more comfortable life doing all the things that they CAN do. They're immobile, not ignorant. These children do still understand what's going on around them and wouldn't you like to know that maybe one day when they smile it could be made possible with your help? Please give. I know all of you are going out and buying ridiculous things this season you don't really need or getting gifts for people you don't really want to be buying anything for. Put that money towards something WAY more special.
Once again, that link is http://www.desotorecords.com/cal/index.shtml . Not only can you donate from that link but you also can learn more about this condition. I thank you in advance for any money you donate, even if it's not that much at all. It means a whole lot to a parent that will just get to spend what time they will have with their child and not have to worry about money.