Please see the last post for more information, but the following is the link for Sophie's Memorial Walk/SMA Fundraiser which we be held on Saturday, June 16th! We hope to see you there. Feel free to email if you have any questions:
www.fsma.org/sophieterhorst
for questions: lizterhorst@gmail.com
Thank you!
Thursday, April 12, 2012
Monday, March 26, 2012
Sophie's Walk & Roll for SMA -- Save the Date! (June 16, 2012)
Hi everyone,
First off, we’d like to say thank you for everybody’s continued support over the last few months. We’re doing pretty well so far, and while we miss Sophie all the time and know we have a long road ahead of us… we continue to talk about her and look at her smiley pictures and videos everyday, and appreciate when others aren’t afraid to mention her name up, ask how we’re doing, etc… she’ll always be a big part of our lives forever.
Second, we recently returned back to Chicago after taking some time away, including a stop in Cambodia where we volunteered at an orphanage for children with disabilities and/or HIV. We highly recommend the experience of volunteering abroad for people of all ages, experiences, etc… here’s some pictures from our time there: Cambodia pics (best viewed via “slideshow” option in the upper left corner, pictures move pretty quickly unless you pause the automatic transfer)
Lastly, we are excited to announce the date of Sophie’s memorial celebration and our first annual Walk & Roll event to raise awareness and funding for SMA: Saturday, June 16th. We look forward to celebrating Sophie’s life with everyone and helping support a great charity for this terrible disease. See below for the official “Save The Date” for more details, official event website and registration page will be available soon.
Thanks again for all of the support,
- Liz & Mike
Event Description: Celebration of Sophie’s life and our first annual walk & roll event to raise awareness and funding for SMA
Location: Lincoln Park – Chicago (event will be located just south of the Lincoln Park Zoo)
Date: Saturday, June 16, 2012 (note that this is the Saturday of Father’s Day weekend)
Time: Check-in begins at 11:00am CT
Registration: The official website for the event (including participate registration) will be available soon
Travel Arrangements: Note that due to the busy tourist and conference season in Chicago in the summer, we highly recommend out-of-town guests book their travel reservations soon. We have reserved a number hotel rooms for out-of-town guests at discounted rates, let us know if you would like to reserve one of them.
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Sophie’s Story:
Our beautiful daughter Sophia Kathleen TerHorst (“Sophie”) was born on March 12, 2011. Despite being a little peanut at birth (4lbs 5oz) and a few other challenges early on, she did great when we brought her home from the hospital and we were filled with the hopes and dreams that all first time parents experience.
Our entire world flipped upside down a few weeks later. We had noticed that Sophie had below normal movement of her arms, legs, head and neck, and took her to see a pediatric neurologist who hinted that Sophie might have Spinal Muscular Atrophy (“SMA”). This feedback came as a huge shock to us, and we immediately “googled” the disorder (like any parent or patient would do) on our phones before we left the parking lot. Sophie fit the devastating description almost perfectly. Lab work was done and confirmed that she indeed had SMA.
We quickly realized the magnitude of Sophie’s diagnosis and decided that palliative care (through Children’s Memorial Hospital and Horizon Hospice) was the best treatment option for her. We strived to give Sophie the highest quality of life as possible… we lived each day to the fullest, showered Sophie with attention and as many experiences as we could, and focused on keeping her comfortable at every stop along the way with the help of the palliative care team. She in turn filled our days with smiles and more joy than we could have ever imagined. Sophie peacefully passed away on her 9 month birthday, and though we miss her more than words can describe, we are better people and she will never be forgotten.
What is SMA:
Spinal Muscular Atrophy is the number one genetic killer of children under the age of two. SMA is an inherited and fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing. ~1 in 6,000 newborns have SMA, which equates to two newborn children born with it each day in the US on average. One in every 40 people carries the gene that causes SMA, which means there are more than seven million carriers in the US alone. Currently there is no treatment or cure, however awareness and DNA testing (which can be done with a simple blood test) are very important to preventing this terrible disease.
Sophie’s Walk & Roll Event:
The purpose of Sophie’s walk & roll event is two-fold. One, we want to honor Sophie who was the most amazing soul that we have met. We look forward to catching up with family, friends and anyone interested in participating to help celebrate Sophie’s life. Second, we want to raise awareness and money for SMA. An organization called Families of SMA (“FSMA”) is helping to organize the walk and was a great resource for us during Sophie’s life. We want to give back by donating proceeds from the walk to their organization to help support families impacted by the disease and to help with research in hopes that one day no other family will experience the sad reality of SMA.
Questions or Ideas:
If you have any questions on the event or SMA, just ask. Also, if you have ideas on how to help share Sophie’s story and/or increase awareness and testing of SMA, we’d love to hear from you.
Thank you for all of your support,
- Liz & Mike TerHorstMonday, January 9, 2012
Remembering Sophie
We can hardly believe that it's been 4 weeks since Sophie passed. She taught us more in her 9 months of life than we could have ever imagined, and touched so many lives through her courageous attitude and loving spirit every single day of her life.
We've been on a rollercoaster of emotions... we'd love to say that everything is 'fine', but that is not entirely true. We miss Sophie more than words can express, and know that we have a long road ahead of us. Despite this, we are past asking 'why her' and 'why us' because those questions can't be answered and do not help us more forward. What we do know is that Sophie was an amazing soul who will continue to live on through us and all of those she touched.
Thank you to everyone for your support! It has helped to make this extremely difficult situation a bit easier. Thank you to those who lit a candle in memory of Sophie. If you haven't already, please consider lighting a candle in memory of her and take a picture of the candle with you and/or a special note to her/us and send to lizterhorst@gmail.com. We will be compiling these and assembling them into a memorial album.
In the future, one of our primary goals will be to make Sophie proud of us. With this in mind, and to help us try to move forward, we have decided to take some time off of work and volunteer abroad. We recently finalized plans to travel to Cambodia and volunteer in an orphanage for children with disabilities (through a great organization called Ubelong) and will arrive there next week.
Stay tuned for more details on Sophie's memorial work here in Chicago that will take place in late spring / early summer.
We've been on a rollercoaster of emotions... we'd love to say that everything is 'fine', but that is not entirely true. We miss Sophie more than words can express, and know that we have a long road ahead of us. Despite this, we are past asking 'why her' and 'why us' because those questions can't be answered and do not help us more forward. What we do know is that Sophie was an amazing soul who will continue to live on through us and all of those she touched.
Thank you to everyone for your support! It has helped to make this extremely difficult situation a bit easier. Thank you to those who lit a candle in memory of Sophie. If you haven't already, please consider lighting a candle in memory of her and take a picture of the candle with you and/or a special note to her/us and send to lizterhorst@gmail.com. We will be compiling these and assembling them into a memorial album.
In the future, one of our primary goals will be to make Sophie proud of us. With this in mind, and to help us try to move forward, we have decided to take some time off of work and volunteer abroad. We recently finalized plans to travel to Cambodia and volunteer in an orphanage for children with disabilities (through a great organization called Ubelong) and will arrive there next week.
Stay tuned for more details on Sophie's memorial work here in Chicago that will take place in late spring / early summer.
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:
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 |
Sunday, November 27, 2011
Sophie Update/Thanksgiving
For the past several weeks, Sophie has been more irritable than before and not her 'normal self.' We have been working closely with her palliative care nurse and health care team at Children's Memorial Hospital to figure out what might be causing this and to help keep her comfortable. We have adjusted some medications and made other small changes and she seems to be doing a little better the past few days.
Sophie has also started music therapy which she loves! Her music therapist, Rachel, is wonderful and Sophie loves watching her play guitar.
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| Nurse Jennifer |
Sophie also had some visitors for Thanksgiving:
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| Uncle Brad brought his guitar! |
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| Nonnie, Carla, cousin Zoe, Aunt Jenny |
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| Pretty ladies |
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| Sophie loves Zoe's hair |
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| Sophie can't get enough of Brad playing his guitar |
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| Grandpa during his last visit |
Friday, November 18, 2011
8 Months Old!
On November 12th, Sophie turned 8 months old! It's been difficult some days to get out, so we celebrated her birthday in parts with singing & cake, Shedd Aquarium, and a local botanical garden on different days... here are the pics!
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| Time flies by... can't believe she is already 8 months old! |
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| A ladybug cake for our little ladybug |
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| She approved |
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| Someone is very interested in the fish! |
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| Jellyfish exhibit |
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| View of the city outside the aquarium...someone decided to take a nap before the picture |
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| Sophie loved the plants at the botanical garden |
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| Fun with Daddy |
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| A little rosebud |
Wednesday, November 9, 2011
Entourage part 4
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| Nap Time |
Sophie has met so many great people in her 7 (almost 8) months of life. Here is more of Sophie's crew:
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| Christine |
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| Little Audrey and Julia |
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| The Kurtz Family |
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| Sarah, Henry, and Ryan |
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| Brian and Elizabeth |
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| Nancy and Elliot |
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| Diane Blain |
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| Kris Baumgartner |
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| Tina, Ally, Brianna, Maddizon |
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| Jeni and Jacob |
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