Kristina, a 13 year old middle school student from Lake Tapps, WA will participate in the upcoming Portland Marathon on October 6th in Portland, OR. Thousands will be there, running for their cause. What makes this unique is Krissy herself and the reason she’s participating. You see, Krissy is non-verbal and she can’t walk independently.
Krissy was diagnosed prenatally with a rare genetic disorder called Trisomy 18 or Edwards Syndrome. In simple terms Trisomy 18 means that Krissy has an additional 18th chromosome, in other words she has “Designer Genes!”
Doctors gave us the grim statistics. They explained that this condition was “Incompatible with Life.” They told us that Krissy would likely die before her birth. They were certain that if even if somehow she survived birth, she would die soon after. “Either way,” the doctor said, “This is not a viable pregnancy. There won’t be a baby to take home from the hospital.” Today that baby is 13 years old!
Krissy, on the other hand, had different plans and she chose to “ignore” their statistics. Statistics which said that of the very few children with Trisomy 18 that survive birth only about 10% live to celebrate their first birthday.
Wait a minute, 10% does not equal “Incompatible with Life.” 10% means hope. 10% means possibility. And Krissy is living proof!
Where there is Life there is Hope!
The answer to that comes in meeting our friends Larry and Katie Wheat. You see Larry and Katie’s lives had also been touched by Trisomy 18. Their precious daughter Abigail also had Trisomy 18. Sadly, the other part of the “statistics” touched their lives and Abigail was born “still” on August 9, 2002. We met online through SOFT (the Support Organization for Trisomy www.trisomy.org) and we met in person when Krissy and I joined them for a balloon release in celebration and memory of Abigail’s birthday.
Abigail is the driving force behind A Butterfly’s Touch, www.abutterflystouch.org, an organization founded by Larry and Katie Wheat that supports families whose lives have been impacted by the heartbreaking loss of a child to early pregnancy loss, stillbirth, or newborn death.
For years, Larry had been wanting to do something to bring Awareness to infant loss and to the Trisomy 18. When he contacted me a few months ago asking if he could push Krissy in the Portland (half) Marathon, Randy and I were first surprised and then thrilled. The perfect opportunity!
But Larry and Krissy won’t be running alone. Krissy’s “running chair” will be adorned with ribbons. These ribbons will represent angels like Abigail for whom the syndrome was so complex that they did not survive. But like Abigail, these children have names and their sweet lives, regardless the length, matter. There will also be ribbons representing surviving children around the world. We want to show that Krissy isn’t alone, that there are survivors of Trisomy 18 (as well as other rare conditions like Trisomy 13 – Patau Syndrome, Trisomy 9 and many others.)
If you are the parent or family member of a Trisomy Child, living or passed, and would like your child represented in this historic “Run with Krissy,” please click here for our Facebook Page. Once you’ve “Liked” the page you can add your child’s name, birthday and diagnosis. Please post a photo, if possible, so that your child can go on the Running with Krissy – Bringing Awareness to Trisomy and Infant Loss Wall of Fame!
All we ask is that once you have registered your child, please post the Facebook page link to your Facebook wall with the comment, “Your child’s name” is Running with Krissy! ie: Abigail is Running with Krissy!
Please consider supporting Larry and Krissy’s effort with a donation:
Larry has been training for months and you can find his blog here: http://runningwithkrissy.blogspot.com
You can follow Krissy’s Story at www.krissysstory.com.