Time is Running Out

"When our oldest son, Keaton, was 6/8 months old we could tell that he was weaker than he should be.  At 11 months he was diagnosed with SMA.  It is a horrible feeling to find out your child has a life threatening disease. When I became pregnant again, with Addison, we were able to get an amniocentesis to find out if she would have SMA as well.  The test was positive. We knew there was a 25% chance that each child could be born with SMA, but we hoped that the 75% chance of a healthy baby would win.  It didn't.
When we found out I was pregnant again we were nervous and excited.  We went in to get another amniocentesis and found out right away that although the baby did not have SMA, he had another disease called anencephaly and would not survive after birth.  I carried the baby, Eston, full term.  He was fine while in my tummy, but he died the day he was born.  We got to hold him for a little while before they took him away, and when they did, there came an emptiness and heartache that cannot be described.


Keaton and Addi continued to grow and fill our lives with joy, but Addison started to have trouble eating, and needed a feeding tube.  We thought that would help her to thrive, but her body didn’t take to it and she threw up a great deal.  She got very sick and was scheduled for a surgery to help her body accept the feeding tube.  She didn't make it long enough.  
Addi died one week before her third birthday.


Soon after Addi's death, my husband and I knew we wanted to have another baby, it felt right to us.  We knew the chances, but hoped that this time the 75% would win out.  We thought, "surely we will not have another baby with SMA."  The odds were still against us.
Our baby Bryce is 4 ½ months old now, he is a healthy chunky baby, but already showing weakness.  Keaton is 6 and every time he coughs or anyone around him coughs we tense up and feel so much stress.  We want to dedicate all of our time to keeping him and Bryce happy and healthy.
We love these babies so much, and losing them is very nearly more than we can bear.  Please help us spend as much time as we can with them while they are with us."


-Lana Weimer