Saving Sadie. Neuromuscular Disease
Every dollar helps since we are having to be home from work but most of all we request prayers. We truly believe god has big plans for our girl and we want his healing more than anything. Thank you guys so much for the constant messages and love. We appreciate every single one of you!!!!!
As of Sept 20, 2016 Sadie has been freed from the diagnosis of SMA! We are praising God for that. She has undergone several surgeries and numerous hospitalizations. Sadie has had laser throat surgery and a GTube placed. She has fought, and won, against the flu, pneumonia, RSV, the Rhinovirus and many bouts with lungs collapsing. She is such a fighter. Her spirit is so beautiful and so contagious. Her smile can light up a room!
She has been accepted into the Undiagnosed Disease Network through Harvard University at Duke Medical. Now we journey back and forth to see specialist in the hopes that a diagnosis will come. We brace ourselves out of fear of the diagnosis, yet we are so blessed and Sadie is so at peace with what God is using her life for. She is a testament to Gods mercy, love and grace. Thank you for loving us and journeying with us
First, she will have a Supraglottoplasty in order to open up her airway. This will hopefully help her breathe easily and allow her to properly swallow.
Second, she will have a Gtube placed.
Third, she will be given a Nissen surgery to tighten the entry way to her stomach.
The recovery would normally be short and simple but because she has low tone and is prone to sickness... They expect the recovery time to double.
Keep us in your prayers this coming up week!
Praying for Baby Sadie !
My daughter has SMA, they told us the same thing, she wouldn't live to be 2. She's 10&1/2!!! And now there is a first ever treatment called Nusinersin (spelling?) it's AMAZING!!! Type 1's are standing, breathing and eating unassisted! There is a large network of SMA families! Many adults with type 1! And now the possibilities are endless! Sending prayers and hugs! To Sadie and family!
Don't lose hope! I know someone who has the most serious form of SMA, was given the same prognosis, but is now 21 years old and in college!