Sarah's Story (1p36dsa fundraiser)

Posted by Michelle Finn on



Sarah's Story - Written by her mom Kylee

I was completely dumbfounded when I found out, at 20 weeks pregnant, that I would be having twins!  At that ultrasound they also told us that something didn't look right with my Baby "a".  What followed would be months of weekly ultrasounds, bedrest, meds...and finally the birth of our two girls.  

Sarah was much smaller than her sister, and very delayed in hitting any milestones.  Finally at about 9 months, we got a diagnosis...1p36 deletion syndrome.  The geneticist who diagnosed her told us that she was one of 90 kids in the world with this syndrome.  We soon found out that this syndrome was much more prevalent than we first were told.  
Sarah is an amazing fighter.  She began having seizures on her first birthday.  Digestive problems and chronic constipation were also big struggles for my girl.  Sarah has been through more surgeries than I can count on two hands, some of the bigger surgeries including a spinal fusion, colectomy, ileostomy, laminectomy with shunt placement, exploratory laparotomies, appendectomy, g-tube, abdominal decompression...and the list goes on.  This girl has been intubated and in the PICU on more than one occasion, and comes back stronger than ever!
I don't know anyone with her pain tolerance, not do I know anyone who can function on as little sleep as she seems to think she needs!  She loves her iPad, and her favorite things to watch include Dr. Phil, The Young and the Restless, The Weather Channel, Good Luck Charlie, and Taylor Swift music!  She has a unique bond with her amazing twin sister, Sophie.
Don't forget our fundraiser for 1p36dsa. 25% of the profits from ALL the sales this month will be donated to Shop For an Amazing Cause.
Just click on the home or catalog button above to shop.


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  • This makes me chuckle because Riley has the highest pain tolerance I’ve ever seen and when we used to watch TV he LOVED Dr Phil for some strange reason! haha

    Angie Ebersole on

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