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Submitted by Comments:
Name: Laureentnv
From: Wilhelminadlp
E-mail: zev73x7qqa0tjg@gmail.com
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Added: June 29, 2017 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: kh16gl
From: yh0xqb
E-mail: q0wusq@gmail.com
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Added: June 19, 2017 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: Mindy
From: Bronx, NY
E-mail: Mfv156@yahhoo.com
You are an amazing woman. Thanks for sharing. I came across your story looking for support on grieving a year later. tomorrow makes a year that my niece Niya gained her angel wings she had sma2 doctor's told us she wouldn't make it pass the age of two she passed at the age of 22. Her, Devon,Steve and all of the sma angels are at peace
Added: September 29, 2016 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: Annette
From: Neosho,MO
E-mail: annetterose45@gmail.com
Your SMA story is my first to read. I am just searching for answers and how others handle this. My 6 month old grandson is having the EMG done this coming Thursday and the pediatric neurologist at Children's Mercy in KC feels he has SMA. We are praying so hard he doesn't. Like your baby, our baby Logan was born healthy after a long labor. The thing that concerned me after a couple of weeks is he would put no resistance on his legs when we stood him up. He was able to hold his head up while on our shoulder but has never been able to lift it or anything on his tummy, bring his legs and arms up. At 4 months, he had regressed. He can move his feet a bit but arm movement is little, he has lost control of his head, he does nothing with his legs, no back control and the neurologist said he definitely has hypotonia. She ran the creatinine level and that was fine, brain MRI was fine. She is sending off his blood for SMA and other genetics testing but it will be many weeks before any of that comes back. My daughter called me a bit ago and said the neurologist called her personally and wants the EMG this Thursday and expressed her concern of SMA. He has only regressed from birth. Like your baby, he is bright eyed and smiley. I have not yet shared this site with my daughter because she said she doesn't want to entertain the thought of it being SMA. My heart is breaking because as a Nonna, I knew something was wrong and our baby presents symptoms just like your baby. I'm scared, sad, angry, and more. I don't know how to not cry in front of my daughter and her husband, along with his 3 year old big brother!! I cried the entire time I read your story! I'm so sorry and I have never dealt with the loss of a baby. I'm sad that each time I hold our sweet boy, I will know that he won't live a long life. I'm a deep believer in God but feeling this is all too unfair right now! Unfair that any children have to die. My heart is just breaking.
Added: September 16, 2016 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: Julia Chanay
From: Lenexa, Kansas
E-mail: juliachanay@yahoo.com
I read your entire story of your son's life and I appreciate you sharing this with me. Devon is a darling little boy. You were blessed to have him in your lives as well as you all in his. I love how you took so many pictures and showed his cute happy smile. Great parents you both are.
Thank you,
Julia
Added: February 23, 2016 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: Ashley Smith
From: Yarmouth, ME
E-mail: blaise_1@hotmail.com
I stumbled across your site while researching "hypotonia" symptoms for a friend, whose baby was born with "floppy" tendencies. He's now 4 months, has been on a ventilator pretty much since birth, is on a GI tube, and the docs are scratching their heads. Your idea of a list of possible illnesses, then eliminating, is exciting. It gives me hope that just maybe I can help by googling, as silly as that may sound. I cried as I read your story. Not for Devon, he was so lucky to have you! I cried because I take my own fortune for granted every day. I cried because it's not fair that some mothers have to say goodbye to their babies. I'm so thankful that you shared your story. Thank you for your strength.
Added: February 14, 2016 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: Josephine
From: Indonesia
E-mail: lsubianto@hotmail.com
Hi.... I am a mother of twin boys and came across this story accidentally. My tears are running down my face right now as I'm typing this. I am deeply sorry for what happened to Devon and I can imagine what you went through. The story about how he could grab the cross and kept it in his fist for ten hours really touched me, I am sure Devon is in the best place now with Our Father in Heaven. I don't know you but by reading your story I can tell that you are a wonderful and truly a faithful mother. God Bless you and your family Sister!
Added: November 25, 2015 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: Brenda Brewster
From: Texas
E-mail: brenda.brewster@amegybank.com
I just wanted to thank you for sharing such a beautiful story of a Mother's and Father's love for there child. I was looking for a story to send to my nephew who just loss his four year old son, and I came upon Devon's story. I am going to send Devon's story to my family. Thank you again for sharing your son's life and your heart and soul. May GOD bless you and your family.
Added: August 6, 2014 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: Linda Taccetta
From: Staten island, NY.
E-mail: LTaccetta4@aol.com
I just read your story and I think that you are amazing and I thank you for your journal. My neice was just diagnosed with SMA 1 she is 7 months old. I hope my sister will read your story I think it will help her. God Bless You & your family
Added: January 7, 2014 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: Patty Ortega
From: el paso
E-mail: velouria799@gmail.com
God bless your baby and family.
Added: December 23, 2013 Delete this entry  Reply to entry  View IP address  

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