livingformrw.blogspot.com
Just Breathe: Meet Makenzie Rye
http://livingformrw.blogspot.com/p/meet-makenzie-rye.html
July 18th 2009 at 2:10 am. Makenzie Rye Webster was born. This tiny 6lb 19 1/2 inch. beautiful girl. As soon as they placed her on my stomach her eyes popped open. Her arms stretched out and she was here. She was just happy to be alive. She did amazing the first 2 months of life. She was our pride and joy. Life happily revolved around her. She completed our family and made it a dream come true. They had to send in a blood test to confirm but all other test pointed to SMA. November 30th 2009. Makenzie...
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Just Breathe: SMARD
http://livingformrw.blogspot.com/p/smard.html
It usually takes up to 3 months to get any testing results back- Makenzie's blood was drawn on December 3rd 2009 and we got her results back December 31st 2009 (our amazing Doctor sped the process up for us.) Makenzie has a more unusual case- 2 different mutations. How is it different from SMA? With SMA- roughly 1 in every 10,000 children are born with this disease. With SMARD- roughly 1 in every 1,000,000 (if that) are born with this disease. 1 in 40 people are carriers of the SMA gene. We are doing fun...
livingformrw.blogspot.com
Just Breathe: UPDATE... MRW LIVE LAUGH BREATHE
http://livingformrw.blogspot.com/2011/04/update-mrw-live-laugh-breathe.html
UPDATE. MRW LIVE LAUGH BREATHE. I have been wanting to update this for a while but we have had one thing after another come up and I didn't want to update without really knowing what to update! For all of those of you who have been hitting the road or the treadmill to prepare of the 5k. Good for you! But There will not be one :(. Instead we are doing a. CONCERT IN THE PARK. PLEASE save the date. Email me at livingformrw@hotmail.com. Subscribe to: Post Comments (Atom). UPDATE. MRW LIVE LAUGH BREATHE.
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Just Breathe: Maddison's Story
http://livingformrw.blogspot.com/2011/08/maddisons-story.html
Maddison was born a healthy 7lb 13oz on the 6.8.08,she was perfect. When the midwives checked her over they noticed that maddison had positional telapese(club foot)but reassured us that a lot of baby's are born with this and that it would correct its self with a few visits to the physio. We went home quite puzzled and scared,but maddison seemed to be doing fine and was thriving, so i waited to hear from the physio. When maddison was about 4 months old she had what seemed to be a really bad cold,she would...
livingformrw.blogspot.com
Just Breathe: MRW Live, Laugh, Breathe
http://livingformrw.blogspot.com/2011/06/mrw-live-laugh-breathe.html
MRW Live, Laugh, Breathe. The fundraiser is coming together more and more. Some of the great things you have to look forward to:. Farmington City Fire Department. This is just a taste. I would like to reach out to all of you asking for your help. I would be happy to contact them and arrange everything, I just need to know who! We are now collecting donations through our pay pal account. You can connect through the link on my sidebar. And we will, with YOUR help. Blessings on you for doing all that you do.
livingformrw.blogspot.com
Just Breathe: August 2011
http://livingformrw.blogspot.com/2011_08_01_archive.html
A good mother thinks about her children day and night, even when they are grown. A good mother loves her children in a way that they will never understand. A mom will be there for her children when no one else will. A mom would take a bullet, stand in front of a train, and ask God to take her instead of her child". For training for his. We had a lot going on. it was crazy! I called the advice nurse and she advised us to get to the hospital immediately. We whisked ourselves to the emergency room and w...
livingformrw.blogspot.com
Just Breathe: MRW Live Laugh Breathe 2011
http://livingformrw.blogspot.com/2011/08/mrw-live-laugh-breathe-2011.html
MRW Live Laugh Breathe 2011. I don't have tons of pictures this year. I had like 3 photographers last year so I never worried about taking a single photo. This year I left it up to Ryan. Love that man but he doesn't take many pictures. He got a few of the entertainment, balloons, etc. I want to thank EVERYONE that came. You have no idea how much we appreciate your support. Presley and Charlotte Gleason. You put so much into this and it was a wonderful celebration of Kenzie! August 23, 2011. Welcome to ou...
livingformrw.blogspot.com
Just Breathe: Today!!!
http://livingformrw.blogspot.com/2011/07/today.html
I sure hope everyone can make it. There will be the silent auction, raffle, 2 bands, belly dancers, Polynesian dancers, treats, bounce house so much more! Come with your family for a relaxing night under the stars. The entertainment will be great and you will be helping find a cure for this horrible disease. It will be at Woodland Park in Farmington Utah. 300 South 200 East. I map quested the directions to get there so just click. And enter wherever your coming from! Subscribe to: Post Comments (Atom).
livingformrw.blogspot.com
Just Breathe: SMARD Guest - Dakin
http://livingformrw.blogspot.com/2011/07/smard-guest-dakin.html
SMARD Guest - Dakin. Didn't you just fall in love with Presley? I know this little man will melt your heart as well. I first saw Dakin through his Mum's blog before we knew Makenzie was even sick. I thought he was a doll. I never ever thought I would soon have so much in common with this family. He has a wonderful story and I really admire his family. Help us continue to hope. Read more about Dakin HERE. July 02, 2011. July 08, 2011. Subscribe to: Post Comments (Atom). SMARD Guest - Dakin. European Marbl...
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Just Breathe: September 2011
http://livingformrw.blogspot.com/2011_09_01_archive.html
Anthony Gene Trupiano's Story. Anthony's life began with an emergency c-section. Previous to that, I noticed decreased fetal movement in my last trimester. My obstetrician ordered several non-stress tests but each one came back fine. The last one, they decided to also have an ultrasound conducted and noticed that I only had 20% amniotic fluid. So that day I was admitted into the hospital and was to be induced the next day. After I came to, I asked what we had and asked how he was doing. He was great!
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