Sometimes when Mike and I have some time we'll scan some of the sites on SMA. We don't get a lot of time so truthfully we haven't done much research. Last night however, we stumbled onto one sight entitled SMA Angels. All that we saw was a list of names. The names were all babies that had lost their lives to SMA. It was staggering. I keep reading how rare SMA is affecting 1 in 6000 births and yet when you see a sight like that it is a sobering reminder that it doesn't matter how rare it is when it is affecting you.When I saw the long list of names there was a tiny part of me that said "Well, at least we're not alone." But the bigger part of my brain was screaming "Why aren't we doing more? This is complete madness!" We also came across another sight where you can sign a petition to cure SMA. It's an American site and there are currently over 55 000 names on the list. We, of course signed ours. Anybody from any part of the world can sign that petition. Sorry, I don't have it in front of me but I will for the next entry. (Edit: here it is. -Mike) You see, it doesn't really matter where they find the cure. I'll learn to sign my name in Chinese if it means stepping closer that goal.
Ten years, I was told in hospital. Ten years before we'll see anything substantial with human beings! Ten years is far too long to save our Georgia and sadly, far too long to save the hundreds of babies that will be born in the next nine. Currently, there are no treatments, no diets or exercises and no surgeries. In essence, no hope for the babies born between now and 2018. Some of the babies are living a little bit longer because of the use of the Vpap machines. Georgia would have left us just over a month ago without one. Weeks and months however doesn't even come close to being enough when we are talking about infants.
So, if your heart breaks as you read our blog or as you look at our gorgeous baby girl I throw out another challenge to all of you. Find out ways to share info about SMA, even if that means just sharing our story. Maybe some of you will sign that petition (linked above). Whatever little step you choose to take matters!
Georgia is upstairs napping at the moment. We had an uneventful night and she woke up happy. Thank goodness for one more morning!
Kristen
ReplyDeleteYour story today made me think back 7 years ago when my dad was diagnosed with ALS. We were in the same situation (what is ALS?) unbelievable how many people are affected by these horrific illnesses and the rest of the world is totally unaware that they exist.
Lucky for my dad he had 66 wonderful years, unlike the poor babies afected by SMA. The more people that help raise funds to find a cure the fewer the families that will have to expierence what you & Mike are going through.
Lets support SMA in what ever way we each can, either by donating or educating other!
In our hearts & prayers always
Ron, Donna & Mandi
Hi Kristen:
ReplyDeleteMy name is MJ and I have SMA. I am a super type 1 because I do not fit either type. I am 21 years old and am a junior in college. If you look at the Our SMA Angels website again, there are many kids who are still alive toward the bottom. I design most of their websites. Please feel free to email me if you have any questions or if I can do anything to help. My personal website is www.our-sma-angels.com/Margaret
I also have an organization that sends blankets to kids with SMA. You can visit my website for more information at: www.our-sma-angels.com/b4sma
I also encourage you to check out SMASpace. There are many families there who are undergoing the same stage of diagnosis as you are with Georgia. It is a social network where many people have joined to help others in the SMA Community. It is at www.smaspace.com
MJ
Hi Kristin and Mike, I found your site via the petition that I, too, am encouraging everyone I know to sign. Our 11-month-old son was diagnosed last Friday with SMA. My heart breaks for your family because I know that we will be in your situation at some point. I read all of your posts and cried through them all. I will keep your dear, sweet Georgia in my prayers. She is such a beautiful baby girl. God bless your family.
ReplyDeleteWe will certainly work to help pass on the word and raise awareness about SMA. I have forwarded the petition site to my address book and although it is only a small amount I know there are so many people reading your blog that if all of them do the same the numbers will climb. Thank you for taking the time, even during your heartache, to educate others and raise awareness. I hope you are enjoying another wonderfully happy, laughter-filled day with your beautiful girls. Love Em
ReplyDeleteMy name is Victoria Strong and my husband and I started www.PetitionToCureSMA.com shortly after our daughter was diagnosed. Gwendolyn is now 18 months old and it has been a year since her diagnosis. I wish I could tell you it gets better, but the reality of a terminal diagnosis never goes away. However, it does become easier to navigate, to adjust, and most importantly to build memories and have wonderful experiences with your child. We were not sure Gwendolyn would make it to 18 months, but with the help of BiPAP she is doing great. And she is not alone. One important thing for you to know is you do have care options. SMASpace is a fantastic source of information. There are some Canadian families on there, too. Also, if you go to GwendolynStrong.com and look at the SMA page there are some other helpful links. This is not an easy road, but one thing that has helped me enormously is other parents (or MJ) and the little tips they give can make a huge difference. Feel free to email me: vstrong@gmail.com.
ReplyDeleteHello Kristen and Mike,
ReplyDeleteMy daughter Kaitlyn also has SMA Type 1. She is 281/2 months and is a very happy precocious little girl. We live in Halifax, NS. Kaitlyn has an Angel site:
http://www.our-sma-angels.com/kaitlynanne/
I look forward to getting to know your family. Take Care,
Kimberley Hatchard
Hi Kristen and Mike
ReplyDeleteI have been following your blog and praying for your family since I found out about you all. I found a Canadian site and wondered if your daughter qualifies for the clinical trial they have posted??
Families of
Spinal Muscular Atrophy
Canada
Version
Française
P.O. Box 97
Rivers, Manitoba R0K 1X0
(800) 866-0016
Clinical Trial of Valproic Acid and Carnitine in Infants with SMA Type I - Detroit and Montreal locations are seeking participants
Rosetta
Kristen & Mike,
ReplyDeleteThanks for sending the link for the petition to cure SMA. I have signed it and have asked friends and family to do the same and hopefully they'll pass it on as well.
As always, I'm hoping and praying for you to have many more days ahead filled with smiles and laughter from your sweet Georgia.
Ivone