Sofie - An Angel Reborn

The broken cord

We little knew that morning that God
Was going to call your name.
In life we loved you dearly,
In death we do the same.
It broke our hearts to lose you,
You did not go alone;
For part of us went with you,
The day God called you home.
You left us peaceful memories,
Your love is still our guide;
And though we cannot see you,
You are always at our side.
Our family chain is broken,
And nothing seems the same;
But as God calls us, one by one,
The Chain will link again.

Our dear ROHHAD family has been hit hard once again as another beautiful baby has joined the heavens. Sofie became a guardian angel to all ROHHAD children on Saturday, January 22nd, 2011. She has forever touched our hearts and we miss her dearly.

Sofie was able to be visited by another ROHHAD baby while in the hospital. Sophia and Sofie played and played. Having a blast.

Sophia, Sofie, Mackenzie hanging out at the hospital.

Sofie (middle) was admitted in to the hospital in Boston for constant vomiting. They changed her medication and she was discharged with no further issues. She had a sleep study only a couple months ago that show a perfect sleeper. No obstructive or central sleep apneas present. She was then admitted back to the hospital for high sodium levels (a constant problem with ROHHAD). When she became stable she was discharged to a pediatric psych hospital to work with her behavior.

One week ago - Saturday, January 15th, Sofie was admitted back in to the hospital for high blood pressure and swelling. Monday, January 24th, Sofie was set to be discharged from the hospital and while waiting for the papers decided to take a nap. During this nap she suddenly stopped breathing and fell in to a coma.

Saturday, January 22nd, 2011, Sofie passed away. She has truly left a mark on our small ROHHAD family and will be remembered along with our other angels.


WE LOVE YOU SOFIE!!!