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A Sister Bond Like No Other

This sister relationship is so much more than cute snuggles...It’s baffling how important their journeys are to each other.


Thanks to what we learned in our medical odyssey with Emma (through the ups but a whole lot of downs), we have been able to treat Abby’s disease more aggressively. We learned what treatments work, which ones don’t, and how to advocate for out-of-the-box methods that no one would agree to for Emma, but that doctors were willing to try for Abby because...well...I insisted. We did for Abby what I wish we could have done for Emma, if only we had known then what we know now.


Thanks to her Big Sister, Abby doesn’t suffer from the same severity of seizures that Emma always has. Thanks to her big Sister, Abby has maintained enough cognitive ability to eat by mouth. Thanks to her big sister, Abby has the strength to try to roll, to briefly lift her head on tummy time, and to inhale deeply enough that she can breathe. Thanks to her Big Sister...


But without Abby, if Emma had never had a little sister with the same disease, we would have NEVER been able to isolate a gene. We would NEVER have had a jumping off point for research. We wouldn’t have a foundation, or Zebrafish, or have heard of the gene THAP12. We would still be trying to treat symptoms rather than fighting for a genetic CURE! Without her little sister, Emma wouldn’t have hope for a dramatically better future.


Emma’s sacrifice of being first is helping her little sister live a less affected life. But Abbys sacrifice of having the same disease is helping her big sister have hope for a cure. There always had to be two. The world needed both Emma and Abby. And we, as parents, get to be their voice. What a privilege.


So while these sister moments melt my heart and bring happiness to my day...like when Abby cries and is comforted by snuggling into Emma’s neck or when Emma searches for her sisters loud (really loud) voice...they are a representation of the much deeper connection these two sisters share. A bond of an ultra-rare journey, shared by only two people in the world.




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