Tuesday, December 13, 2011

Sophie's Passing

It is with heavy hearts that we inform everyone that Sophie passed away Monday morning, December 12th, 2011 (exactly her 9 month birthday).  We take great comfort in knowing that she passed away very peacefully, in her sleep, and in her mama's arms.

The timing of her passing was quite unexpected for everyone (us, her healthcare team, etc.).  The past two weeks, Sophie had been smiling more than ever, able to go on long walks, and gave us so many incredible memories.  She woke up Sunday morning very lethargic, and slept through most of the day, however we thought she might be simply entering the initial stages of SMA related respiratory decline (which can take months).  Monday morning was much of the same, so we called her palliative care nurse Jennifer to stop by and check her out, not expecting anything significant to come out of her evaluation.  Within 10 minutes of the Jennifer's arrival, Sophie peacefully stopped breathing and passed away while being held in Liz's arms and surrounded in love as she was her entire time with us.

Sophie taught us so much... she was the most beautiful, sweet, amazing little soul that we have ever met... and we will be better people because of her.

We have decided to donate Sophie's tissue to help other needy children, and will have a private ceremony just for the two of us (instead of a public funeral).  We are also planning to have a memorial walk in the spring to celebrate her life, raise awareness about SMA, and raise funds for SMA research and family support.

In lieu of attending a funeral, we would love if everyone can show their support by taking a picture of a lit candle in memory of Sophie (along with yourself and/or a special note in the picture) and sending the picture to lizterhorst@gmail.com. We will be collecting the photos and putting it into a memorial album that we will cherish forever.  We know that Sophie touched more lives than we could have ever known, and we are honored to have been her parents.

Below are some photos from the last week that we were able to spend with Sophia:

Our last family photo... the night before she passed.  As you can see, she was so content hanging out with Mama and Dada... we will forever cherish how happy and peaceful she was her final night with us

Watching Elmo videos with Dada
Hanging out with Mama


  1. Prayers for you and your family. God Bless little angel Sophie

  2. Thinking of beautiful Sophie and her loving parents. Sending you hugs from NC.

  3. Thoughts and prayers to all of you. God welcomed a beautiful angel who will forever touch all of the hearts of those who knew and loved her. More hugs coming from NC to all of you.

  4. Prayers to all of you. Look down on our Shira Sophia and help guide us on our journey!

  5. I love your outlook and I think a private ceremony is wonderful. Our daughter Hannah passed away exactly on her nine month birthday as well, and as for us, we thought we would have more time. We were sleeping on the floor of her room when she passed and it means so much that we were all home together. Our love for each other and our daughter has helped us heal and I wish the very same for you!

  6. I am so sorry for your loss. Our family will be praying for you and yours. My Gods grace carry you and may you find peace in the knowledge of his promise.

  7. Mike and Liz.
    I am so sorry for your loss. You gave Sophie a great life. I'm sure she is in heaven surrounded by love. I will be praying that you will both feel God's peace and comfort in the days ahead.
    Sending our love.
    Deb, Arden, Jillian and Isaac Postma

  8. I just read about this yesterday. I am in tears for you but she was so blessed to have you both as her parents. I'm sure her life was a blessing to you as well. I wish I could have met your little princess. I can't imagine the pain and will continue praying for you guys. You are an amazing woman Liz! And I'm sure your hubby is pretty great too even though I have never met him. Some day. I'd love to connect again. Blessing to you!