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:
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| 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 |
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| Watching Elmo videos with Dada |
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| Hanging out with Mama |
