Sunday, March 29, 2009
Wednesday, March 25, 2009
Tuesday, March 24, 2009
But there is HOPE--the National Institues of Health have chosen SMA as one of the neurological diseases closest to treatment and cure.
The SMA Treatment Acceleration Act is in support of making that treatment and cure reality. This landmark legislation--that already has bipartisan support--will help to unite SMA research programs and ultimately lead to treatment and a cure. We have come to know and love so many of these kiddos afflicted with 'regular' Spinal Muscular Atrophy--they are beautiful children whose lives will most likely be cut tragically short by a disease that is years, yes, YEARS away from a cure. Not decades, not centuries. YEARS. Just a few even.
This particular legislation will not only benefit SMA research, but a whole host of other neurological diseases as well--ALS, Tay Sachs, Fragile X. And most importantly for us, maybe Dakin's disorder (Spinal Muscular Atrophy with Respiratory Distress--SMARD)as well. This Act is so important to us because it is pretty much our only hope: no one that we are aware of is researching SMARD in the US. This is all we have.
This legislation will be reintroduced into Congress this year, but it needs more support. Bill and Victoria Strong, whom we have come to 'know' through blogging, are trying to garner that support with the SMA Treatment Acceleration Act petition. We have posted about the petition before, but wanted to add a few other things regarding raising awareness for it. The Strongs recently posted 5 ideas that one could do to help promote the petition. This is from their beautiful daughter Gwendolyn's blog:
50,000 signatures in support of SMA research is remarkable, but to reach 100,000 we need YOU! Here are 5 ways that you can help us get the SMA Treatment Acceleration Act passed this 111th Congressional session:
Household check. Make sure that your spouse or others in your household have also signed PetitionToCureSMA.com. It only takes 30 seconds.
Petition flier. Download our petition flier (click here to download) and put it up in your community (e.g. coffee shops, lunch rooms, community bulletin boards, etc.) or pass it out to groups or organizations and ask for their support, too.
Hit the streets. Download our petition signature template (click here to download) and start gathering signatures in person. You can either fax, mail, or email (firstname.lastname@example.org) the completed sheets to us once you are done so we can input them.
Facebook. Use your Facebook status to remind your "friends" to sign PetitionToCureSMA.com and ask that they do the same. Also join the Facebook group "PetitionToCureSMA.com" and invite your Facebook "friends" to join as well.
Blogs, etc. Contact blogs, forums, or other online communities you frequent and ask for their help in promoting SMA awareness by posting the link to PetitionToCureSMA.com.
These are great suggestions. In another post they also suggested Twittering.
This Act might just seem like more money spent, but in reality the money that would be allocated towards SMA research is already in the National Institutes of Health's budget. If we can get this Act passed, so many will benefit--the sweet families who say goodbye to their little ones with SMA too soon, those who suffer with ALS or Duchenne Muscular Dystrophy, and so so so many more. Maybe it will even help Dakin to breathe on his own again. Please choose at least one thing to do to help spread awareness. Thank you so much for your help!!
Saturday, March 21, 2009
Let me give you some background: we have battled with Dakin over the eating issue for over a year now. We have tried every which way from Friday to get him to eat, with enough success that he could get his feeding tube out. We have sung to him, read to him, let him watch TV, etc., etc. It has always been at its core a power struggle, since eating is the one thing that Dakin knows that he controls--he can't crawl or walk or stop us from doing breathing treatments that he must have, but he can control his eating. There is nothing on earth I can do to make him swallow. When I figured this out initally several months ago, he ate a lot better because I let him win. Once the power struggle was off, he ate better.
Well, last week I decided that I was done with the pandering. I quit doing the things he had come to expect to be entertained while eating. He figured out very quickly what I was doing and acquiesed for a day or so, though I was mildly worried because I could see him scheming behind his little brown eyes. And he checkmated me: he will open his mouth now, but he spits it all back out. Yeah. I've been outmanuvered. By a toddler.
So what can I do now? I have no idea. I'm torn: do I go back to pandering to him? Do I inform him that if he is going to continue spitting I will only attempt to feed him for a few minutes (because when he wants to eat he will suck it down like it's going out of style) and then quit and let him be hungry for a bit? I am trying to figure out how I can take the power struggle out of it again, and I don't know what to do. At night he will take 500 ccs of milk without pausing for breath because he's half asleep and forgets he's playing his power game. We have come too far for me to quit now. I don't want him to get a G-tube, because his disorder doesn't include compromising of his swallowing muscles. It's not that he can't eat, or that it's even a danger to him--(his swallow study was perfect) it's that he is S-T-U-B-B-O-R-N.
I have to keep reminding myself to be grateful for that stubborness.
Friday, March 20, 2009
I would post the HTML for it, but I am evidently not that intelligent...lol...so hop over to Life of Logan and grab it. Also, wear green today in support of CP awareness!
Here are some facts about CP:
- There is currently no cure for cerebral palsy and in most cases, it is not preventable. In over 50 years, treatments for CP have not progressed much at all. In fact, today, there remains little consensus among medical professionals regarding what causes CP or how best to treat it. (As a mom of a child with an incurable condition, I deeply empathize with this--surely we can do something to help with this!!)
-Cerebral palsy is one of the most common developmental disabilities in the US, affecting at least 800,000 children, adolescents and adults in America. Cerebral palsy is NOT a disease nor should it be considered one. It is not even a simple or single disorder but rather a broad range of disorders that disrupt a person’s ability to move, sit, stand, walk, talk and use their hands. The severity of the movement disorder and the type of movement difficulties can vary greatly. Some patients have only mild difficulties with balance, walking and fine motor skills while patients at the other extreme are completely trapped in their own bodies, fighting rigid limbs, and unable to speak or swallow. (800,000 blows my mind. I can't believe there isn't more research, etc., going on about CP!)
Thanks, Keri, for doing all this work to help raise awareness!!
Wednesday, March 18, 2009
So this is my first attempt at a 'Wordless Wednesday' post. I guess it wasn't quite wordless, but oh well. This was Dakin in the rehab hospital at about 4.5 months old.
Monday, March 16, 2009
She also spoke with a rep in Senator Lisa Murkowski's office. While she was on the phone with him, he looked at Dakin's blog and read through what we have posted here. Gramma also talked to him about the petition and the Act, and he too promised to speak to his counterparts in Washington. In response, this is what Gramma received from Senator Murkowski:
Thank you for contacting me with your support for the Spinal Muscular Atrophy Treatment Acceleration Act. Additionally, I thank you for sharing Dakin's story with me.
The legislation, if enacted, would require the Secretary of Health and Human Services to establish the Spinal Muscular Atrophy Coordinating Committee in order to coordinate activities across the various departments at the National Institutes of Health (NIH), and among other Federal health programs with activities related to SMA. I believe that greater interagency coordination would enhance the scope of the research performed so as to mitigate the challenges stemming from genetic disorders.
You may be interested to know that in 2003, the National Institutes of Neurological Disorders and Stroke (NINDS) established the Spinal Muscular Atrophy Project: A Collaborative Program to Accelerate Therapeutic Development for SMA. The SMA Project's unique collaborative process between private, public, and non-profit partners provides a model research program that can be replicated to accelerate the development of safe and effective treatments for a wide variety of disorders.
The SMA Treatment Acceleration Act has not been introduced in this Congress. Should the legislation be introduced and considered by the full Senate, I will have your support in mind.
Again, thank you for contacting me and all my best to Dakin.
United States Senator
I loved how personalized this letter was--I do think Senator Murkowski may have taken a look at the blog (I check the traffic and we do get some from DC sometimes...lol). Gramma also promised to bug them when the Act gets reintroduced. Thank you for being a great advocate, Gramma!!
Saturday, March 14, 2009
Dakin loves butterflies (especially purple ones). He and his night nurse frequently discuss them, and she has evidently showed him how they fly. So the other night I asked him if he would flap his wings like a butterfly, and he did so! He has made this movement quite a bit lately, and we're pretty happy about it because he seems to be moving his right arm a lot more than he has been the last 6 months or so--this last summer he pretty much quit using it. We're hoping he's coming out of that. He doesn't really have too much strength in his hands, though, so that's why he's letting them hang.
Oh, and sorry about the background noise--night nurse was vaccuuming Dakin's room. I didn't think the noise would show up!!
Thursday, March 12, 2009
Tuesday, March 10, 2009
It has been a sorrowful weekend. Two sweet little ones finished their battles with SMA, and another should have celebrated his first birthday. In light of all this, I haven't been feeling much like writing, but I wanted to do something and so I thought a silly picture might cheer us up. I love this picture--it was taken shortly before Dakin "crashed," if I may borrow an expression from Victoria.
There was a really good point to this weekend, though--as many of you already know, President Obama lifted some of the restrictions on stem cell research. I feel he has put some very responsible stipulations on how those stem cells are obtained, and so I am feeling pretty good about it. Hopefully we can get this stuff going and get some positive results for our SMA kiddos. For Dakin's particular type of SMA, they have already done a successful stem cell transplant on a mouse in Italy, (of course, Italy--as far as we are aware no one in the US is researching Dakin's type) so that's a step, anyhow.
Kind of a ramble. Sorry. But enjoy the picture anyway.