Name: Lina Quezada
Date: August 15, 2006
When I found this page, my nephew had already passed away, cause he had SMA1, but right now, I have a niece that is too SMA1, and I want to thank Mary (Jenna's Mom) for helping us, giving a lot of information. And I want to thank too Laura Stants, she's going to help us with a feeding pump for Lia (my little niece). Really, this kids are angels that God send here so we can learn from them. Although they don't talk, they can teach us a lot of things.
God bless you all!
Name: Helene Armstrong
Date: May 11, 2006
I think this web-site is great and has lots of information and stories to share with others. I would like to thank Laura Stants (firstname.lastname@example.org) for adding my son James Thomas Armstrong to"OurKids" page. James was diagnosed sma1 on July 21 2005. Each person can send a message and share their thoughts and pass it to another what a great way for
awareness of this disease SMA. Helene and Baby James and family
Date: May 05, 2006
This message is for Denise whose nephew has SMARD1. I have a son with SMARD1 and would like to get in contact with you, but your e-mail address wasn't working. If you read this, Denise, please write!
Name: Ester Weenink
Date: April 30, 2006
I was told about this site by a friend. Last
December we lost our son to this terrible decease. He was two months old. He was only a week old when he was diagnosed with SMA1. In those two months we embraced every moment of health we had with him, and loved every moment together. We told our daughter that Ryan is now a little star in heaven and is watching over us.... Thank you all for
creating this site and thus putting people together who have shared the same history...
Date: April 13, 2006
MY NEPHEW, WHO IS SIX MONTHS OLD, WAS JUST DIAGNOSED WITH SMARD1. DOES ANYONE KNOW OF ANY HOSPITALS WHO ARE EXPERIENCED WITH SMARD1? HE IS CURRENTLY ON FEEDING TUBE AND VENTILATOR AND IN A HOSPITAL THAT IS NOT EXPERIENCED WITH SMARD1. I AM ALSO LOOKING FOR SUPPORT GROUPS. THANK YOU.
Name: Joann Pezzuto
Date: April 06, 2006
I can't explain how this site has completely touched my heart. I have a beautiful / handsome little 4 year old boy named Mikey. Mikey has SMA Type 3. From entering this site I can see I am not alone. I will definitely visit again and again. I pray for my son and I pray for all with SMA everyday. I believe with all of my heart that there will be a cure someday. I will never ever lose hope. God Bless You All, Love, Joann Pezzuto
Date: March 05, 2006
i love everyone in this site cuz i know they all lived a great life my friend had this disease
Name: jason williams
Date: March 04, 2006
i would just like to say a BIG THANK YOU to laura for all the help she gave us in creating a page for our son jason kyle.
i am glad jason kyle our son is now a part of this great site and he is now an angel along with the rest of the
beautiful little warriors.
lets hope we can find a cure for this cruel disease .
Name: JASON WILLIAMS
Date: March 01, 2006
I LIKE YOUR WEB SITE I LOST MY SON DUE TO SMA TYPE 1 3 YEARS AGO HE WAS 2 WEEKS OLD AND HE HAD SMA TYPE 1 AND HAD SEVERE BREATHING AND HEART PROBLEMS HE DID INCREDIBLY WELL TO LIVE FOR 2 WEEKS THRU THE HELP OF A BREATHING MACHINE.
I WOULD LIKE TO PLACE A MEMORY OF HIM ON YOUR GREAT WEBSITE IF I COULD PLEASE I LOOK FORWARD TO HEARING FROM YOU KIND REGARDS J WILLIAMS
Date: February 17, 2006
Happy Birthday RJ!!!
We love you, we miss you and think of you always! From your Auntie Kym, Daddy, mommy, Big sisters Kayla and Malia, and baby sister Amaya and baby brother Davian.
Feb 2003 - June 2003
Thank you for providing this site for awareness and healing..
Date: February 09, 2006
Hi - I was looking up the name "Skylar" (for a girl) when I was pregnant with my turned-out-to-be *son*(didn't know if I was expecting a he or a she!) and Google led me to Skylar Saranchuk's web page and then here. These children are really angels on earth, not to mention their parents. I bought some of Devon's stamps in an effort to feel like I was doing *something*. Blessings to all of you.
Name: Matthew Watts
Date: February 09, 2006
Would love to get Logan Watts, my son, on the site, with a link to his site, which is http://peanut.smaaustralia.com/index.php His birthday is 6-22-04. As you're probably aware,I have been active on SMA Support for several months now, but have overlooked this request on this site, until receiving an email from you (Laura) today. Thanks, and here's to a cure in 06'.
Name: Cheryl Fournier
Date: January 29, 2006
What a beautiful website! My grandson Logan Harman also has SMA 1 and is in the hospital with pneumonia. My prayers are with everyone who has been effected by SMA, what a tough road but boy is it worth it. So lucky to have these tough little beautiful children in our lives, to teach us what is really important. Stregnth and love does not come from size or age. Take care, Cheryl Fournier
Name: Terry Holden
Date: January 24, 2006
It's been three years today that our Jacob became an Angel. Mommy and Daddy miss you so much Jacob, we know that you are in the presence of Our Father in Heaven and His beloved Son our Lord Jesus Christ. You have been delivered from this pain on earth and have entered paradise. We love you so much and remember you always.
Date: January 20, 2006
i hope my cousin will get
Date: December 25, 2005
I am the grandmother of Kelsey Bruynseels from Belgium who died on 29/11/05 from this disease. I miss Kelsey very very much; the loss of a (grand)child is a terrible feeling; may God bless Devon and Sidney and all other sma-angels! This website is absolutely fantastic, I come here often and I have read the stories of all this special children. You did a very great job, congratulations! Take care of yourself!
Sincerely, Yvette from Belgium!
Name: LYDIA CLEMONS
Date: December 23, 2005
MY SON ROBERT PERCY GOULD DIED IN 1997 OF SMA TYPE ONE. I HAD ALREADY HAD 3
WONDERFUL CHILDREN AND THOUGHT OK HE WILL GET BETTER I HAD NO IDEA HE NEVER WOULD AND WOULD JUST DIE .AS A MOTHER
WHAT COULD I DO OR SAY NOTHING I HAD TO SIT AND WATCH MY ANGEL TAKE HIS LAST BREATH OF LIFE AND WATCH IT LEAVE HIS
LITTLE BODY. AND LET GOD TAKE HIM TO THIS DAY I HAD NO IDEA THAT THERE WAS OTHERS JUST LIKE ME WHO GAVE
THEIR ANGELS BACK TO GOD NOW I DON'T FEEL ALONE FOR THE FIRST TIME SINCE HE LAST TOOK THAT BREATH OF LIFE AND PASSED TO OUR
GREAT LORD. TO ALL OF YOU WHO ARE GOING THROUGH THIS THERE IS NOTHING YOU CAN DO BESIDES LOVE THEM HOLD THEM ENJOY THEM REMEMBER THEM AND LET THEM FLY AWAY TO A WONDERFUL WORLD WITH THE LORD WHERE WE WILL ALL MEET AGAIN SOME DAY IN LOVING ARMS AND REJOICE . MAY GOD BE WITH US ALL BECAUSE I KNOW OUR ANGELS WE LOST ARE WITH US EVERY DAY OF OUR
LIVES AND WITH EVERY BREATH WE TAKE WAITING FOR US TO COME HOME TO THEM . THANK YOU SO MUCH IN CHRIST NAME AND LOVE LYDIA CLEMONS
Date: December 22, 2005
To all that has been
supportive to Stacey while she's been dealing with her grief. It is amazing how you all stick together and help each other out. I
don't think I could manage myself. I have seen many of your people children. They are very beautiful and they are special. Happy Holidays to you all.