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Submitted by Comments:
Name: Maddie C.
My aunt has SMA so I can relate to this.When Iread this story, it made me sad.
Added: May 16, 2013 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: Mike Battaion
From: Livermore, Ca
E-mail: Badeon1@yahoo.com
I am Papa to Isabella Grace. We were blessed to have her for 10 days and there is not a day that goes by that I don,t think of my beautiful granddaughter. Thank you for sharing your story. My son and daughter-in-law were so brave and strong during this difficult but also wonderful time because God blessed us for those 10 days. I will add you and your family to my prayers and ask our Lord to bless you all.
Added: November 16, 2012 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: Chandra Battaion
From: Livermore, CA
E-mail: chandrabattaion@gmail.com
Hello there Mommy and Daddy of Devon.
I don't even know where to start or what to say. It's hard to type through my tears. Your son was and always will be so beautiful and very loved. I'm very sorry for your loss.
I too know your pain. On August 20, 2012 I gave birth to mine and my husband's second daughter Isabella Grace via C-section. She spent her 10 days of life at UCSF and passed away in my arms on Aug 30, 2012 surrounded by her parents, big brother and big sister, grandparents, uncle, and many friends.
Those ten days of her life were for lack of a better word torture and we felt like we were trapped in hell. We are a very faithful family but I must say I was struggling with understanding how and why this was happening to our beautiful baby girl. Why was she so sick and how on earth could the Dr's. not be able to help her? She was so perfect from what we could tell throughout my pregnancy....now she is dying.
Last week we finally got the autopsy report back and it was SMA with possible early onset of ALS.
I haven't yet finished reading your entire story but I will. I looked at many of the photos of Devon...I thank you and commend you for sharing his and your families story for others like myself to read.
I wanted to share briefly our story of Isabella and I plan to post more to you later.
God Bless you.
Chandra
Added: November 16, 2012 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: Tina Bigham, RN
From: Chattanooga TN
E-mail: tina_72us@yahoo.com
I'm a nurse, and a mom, and I happened on this site doing some research. I was truly touched by your story, and by your sons' lives. I can't begin to imagine how difficult this all was for you, and my heart goes out to you all. I wanted to sign the book because your daughter and my daughter share a name, Kaylee. I just thought that was kind of cool! My heart and my prayers go out to you and your family. God Bless!
Added: May 1, 2012 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: karen freeman
From: winder ga
E-mail: karenbrown-freeman1963@live.com
Thank you for your story ,I am trying to learn as much as I can about SMA ,my son and his girlfriend tested positive for SMA she is 20 weeks ,we are not completely sure if Kairi(Kyree) will have it but trying to grasp this terrible disease.You have given me hope that there will be joyous days of just her smile and holding her ,Please pray for us and our journey ahead.
Added: March 18, 2012 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: Siti Masturah
From: Malaysia
E-mail: ghaziy1212@me.com
I'm a mother with the same experienced as yours. My son was an SMA type I and he managed to strongly and bravely went through a happy life for 11 months.

Your blogs inspired me soooo much as it's quits hard to get a support group for SMA in my country. It's been 150 days since Ghaziy (his bestowed with a great name as many of my friend and families said) left me.. And reading your little Devon's story a little less cure my heartache and bitterness in missing my one and only child.

Thank you for your lovely and informative blog
Added: March 9, 2012 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: Mary Fisher
From: Flora, IN
E-mail: sonshyne@embarqmail.com
Such a moving story and so well documented. Devon looks just like his daddy. I only wish I could have known him.
Added: February 15, 2012 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: Stephanie
From: Nanaimo, Vancouver island BC
E-mail: thecanadian02@hotmail.com
This is such a beautiful tribute to an amazing little boy. Devon has touched my heart and because of him and your ability to tell his story I will be a much better mom to my little man. I will be more patient, loving and understanding. I will enjoy each moment and evey hug. Thank you for this gift.
Added: February 7, 2012 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: Jan Hunter
From: Norfolk, England
E-mail: janet.hunter@hotmail.com
I found your site through looking up information on SMA1 as my Granddaughter who lives at home with us was diagnosed just before Christmas. She is 6 months old and called Katelyn, her Mummy`s name (my Daughter is called Rachel).
Added: February 4, 2012 Delete this entry  Reply to entry  View IP address  
Submitted by Comments:
Name: Sallie Capen
From: Olathe, KS
E-mail: kalairs-grama@comcast.net
Thinking about you and your dear mother sweet boy. Just because
Added: September 22, 2011 Delete this entry  Reply to entry  View IP address  

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