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Submitted by Comments:
Name: trista ramshur
From: cleburne tx
E-mail: buttercup074@yahoo.com
i just found out today that my 5 month old daughter had sma 1 stage. we have been to several doctors now just to see what was wrong with her then we had to wait a month for the results to come back positive. my family is so devastated because we have never had to deal with any thing this serious. we have no clue what to do. so if any one has any thing that could help us please dont hesitate to email me. Me and my husband are only 19 so we are not to educated on stuff like this so if you can help please do.
Added: November 11, 2008 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: Annette Swetnam
From: Indiana
E-mail: annetteswetnam@gmail.com
Hi Swanson family,
I'm not sure how my husband Doug stumbled across your beautiful site while he stayed up the other night when we didn't have a nurse (he was letting me sleep because I'd been working the past few days as a freelance makeup artist at Saks) but when I got up the next day and attempted
to wake up while reading news on the computer I came across your site with the bittersweet story of your family. As a mother of two girls who have been affected with SMA since infancy I was racked with grief upon reading your story. It is my daily fear and worst nightmare to lose either one of my girls. You are all brave beyond words.
We were lucky enough to be rewarded with a trip to Orlando last fall by Make-A-Wish so now Betsy and Katie are sure that we need to take another trip. I've decided that we should come to Savannah for your Angel's Ball in November which is both of my girl's birth month. I think it'd be a wonderful trip for my all of us. I just really wanted to let you know how inspiring your family is. Thank you ~ Annette Swetnam
Added: September 29, 2008 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: Doug Swetnam
From: Fishers, Indiana
E-mail: dougswetnam@yahoo.com
Your story is part heart-warming and part heart-breaking. And humbling. Oh, so very humbling.

My oldest daughter, Betsy was born 11/25/1996. She was hospitalized at 3 mos., but we didn't get a diagnosis until she was nearly 5 mos. By that time, we were expecting again. We did the SMA test on the "new" baby and were relieved to learn she didn't have SMA. Our youngest daughter, Katie, was born 11/09/1997. She must have been the most scrutinized baby ever. Unlike her older sister, she seemed strong as an ox and perfectly healthy. But as she approached 3 mos. old, she started to decline, too. Long story short, she also had SMA type 1. The pre-natal tests aren't 100% and we just wound up in that unlucky small percentage.

When we decided to put our girls on ventilators, my wife, Annette and I vowed to make every day count. That's proved far more challenging than either of us dreamed. Both girls attend our neighborhood school. (Our oldest is a pleaser-type and the good student, our youngest is the rebel-type who drags me in to visit the principal) How normal is that?

Like all SMA parents, we live precarious day-to-day lives knowing the future is grim. We've had a thousand close calls so far, and we know we'll eventually lose one of those battles. With my girls being so close in age to your girls, it was so easy for me to imagine your twins. And equally impossible for me to imagine losing one. God Bless you.
Added: September 28, 2008 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: Sarah Bacon
From: Leicester Uk
E-mail: sarah1969sarah@hotmail.com
I have just found your wonderful page. Such beautiful girls. My daughter died in 1998 of type 1 sma aged just 7 months and to this day it hurts but see such happy faces makes its so much easier. Take care and will be thinking off u all love Sarah
Added: September 5, 2008 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: Lynne Muirhead
From: Clayton, NC
E-mail: lynnemuirhead@hotmail.com
David and Dana, I was so sad to hear about the death of your daughter. They look just like David, and David, you look like your big brother! Hang in there and remember you have family in NC that thinks of you often.
Added: August 28, 2008 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: Susan Ctibor
From: Monroe, GA
E-mail: sctiborpt@monroeaccess.net
Dear Skylar and the Swanson family,
Skylar, you will probably not remember me at all and that is OK, but I was the physical therapist that worked with you and Cassie when you were only two! I moved away when you were three, and I have thought of you more often than you could imagine! Out of the blue the other day, thinking about you, I did a search for the website your uncle had made for you back then and was so surprised to find it again. More importantly though, I was so sad to hear about Cassie. I did not know she had gone to heaven. Please give my love to your family and know that remembering the fun we had together back then brings a big smile to my face. Love, Ms. Susan
Added: July 28, 2008 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: Jenna
From: Bc. Canada
E-mail: nevergiveup301@aol.com
Hi Skylar
My name is Jenna and i came across your site. You are a brave, courageous fighter. I have 12 illnesses I fight daily. You will be in my thoughts and prayers. I have a site, too.
Added: April 13, 2008 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: Wallette
From: Savannah, Georgia
E-mail: wwidener@neurospecsav.com

 

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Added: March 12, 2008 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: Evelyn
From: Savannah
E-mail: shortcakes29@hotmail.com

 

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Added: January 24, 2008 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: Melissa Tinfow
From: Savannah, GA
E-mail: mtinfow@bellsouth.net
Sky, I want to know MORE about your new brother. How exciting!!! I have a little girl named Jessie who lives in heaven with Cassie. Jessie lived with SMA a short time in 1988 way before you were even born. She has a little brother named Jonah too, he is 3 years old now. I hope you are staying well.
Added: November 22, 2007 Delete this entry  Reply to entry  View IP address  

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