Fund Raising to Support Trisomy – Families Paying it Forward

Fund Raising to Support Trisomy – Families Paying it Forward

Please scroll to view the current events that are raising money to support SOFT (the Support Organization for Trisomy.) If you would like to submit your fund raiser for Trisomy support organizations please submit it here:

Welcome to the Jump4Trisomy Awareness Challenge

Welcome to the Jump4Trisomy Awareness Challenge

Welcome to the Jump4Trisomy Awareness Challenge!

Why did we choose jumping for our awareness challenge?

We wanted an activity that is easily adaptable for any age or ability. Jumping Jacks inspired us…they can be done sitting, standing, or laying. Modifications such as just using arms or legs can be made while still completing the challenge. We want as many people to be able to participate. Best of all, we all have the ability to either move or have someone help us move!

Be Inspired and Be Creative – jumping jacks, jump rope, jump on a trampoline… Our wish list includes getting a group of skydivers to Jump4Trisomy!

When you have created your Jump4Trisomy video please share it to the Jump4Trisomy Facebook page.

SOFT (Support Organization for Trisomy) will be doing a drawing for weekly giveaways, your Jump4Trisomy video qualifies you for the drawing. Once you have created and uploaded your video
 
 
Enter Jump4Trisomy Drawing
 
 
Please keep the challenges coming and help us continue to raise #trisomyawareness as we #Jump4Trisomy!

Donations are not required in order to particpate however if you would like to make a donation you can do so here: Donate to Jump4Trisomy

More on Trisomy Awareness can be found on our Trisomy Awareness Facebook Page.

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Running with Krissy Awareness Ribbon Request

Running with Krissy Awareness Ribbon Request

We are honored that you are including your child in this historic event!. Please fill in the information below to complete your registration.

Note: Click in the far left part of each field to enter your information!

* indicates required field
Note: Click in the far left part of each field to enter your information!
Please complete the following information for the child you are requesting a ribbon for.
We want to include everyone in the race. For that reason there is no charge to have your child honored with a ribbon. If you would like to have the ribbon mailed to you after the race we ask for a $5.00 donation to cover postage, materials and time. You will receive an email invoice with instructions for making your donation through PayPal.

If requesting ribbon returned please include your full mailing address including Apt or Box number if needed.
If your child does not have an online story, please share it with us!

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Maximum file size: 2mb.

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Trisomy 18 Teen to Participate in the Portland Marathon!

Trisomy 18 Teen to Participate in the Portland Marathon!

Krissy, age 13, Full Trisomy 18
Krissy, age 13, Full Trisomy 18

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!

So, why the Portland Marathon?portland marathon

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 13Patau 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!

https://www.facebook.com/running.for.trisomy.and.infant.loss

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:

www.crowdrise.com/runningwithkrissy

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.

For support with a trisomy diagnosis contact SOFT at www.trisomy.org. Additional resources can be found on A Butterflys Touch and TrisomyTalk.com.

Lilly’s (Little Firecracker!) Mom Celebrates Lilly’s Birthday with Thirty One Gifts Fundraiser

“For July – in memory of what would have been my Lilly’s 3rd b’day on July 4 – I’m hosting a “Thirty One” fundraiser for SOFT and my Lilly Projects! See this blog post for details.”

Pray For Lilly: My Thirty One gifts fundraiser for SOFT and The Lilly Memorial Project

Pray For Lilly: My Thirty One gifts fundraiser for SOFT and The Lilly Memorial Projecthttp://pray4lilly.blogspot.com/2013/07/my-thirty-one-gifts-fundraiser-for-soft.htmlUPDATE:  Thirty-One link is corrected below. Today is July 1st!  My home is decked out in red white and blue both to celebrate July 4/Independence Day – and . . .…