PowerPoint Presentation

Sunday, October 18th, 2015Nationwide Children's HospitalColumbus Marathon

How is this race different from others?The Nationwide Childrens Hospital Columbus Marathon & 1/2 Marathon is the Most Meaningful Marathon in the Country! Each mile is dedicated to a Patient Champion, including 24 individuals who have shared their story to inspire the runners and walkers1 Angel Mile to honor the children who have already run their race1 Encore Mile featuring all the patients who have lined the course since 2012Over 180 Families applied for their child to be chosen as a Patient Champion.

Kolby Grace was chosen to represent Mile 10.Kolby Graces storyYoungest of 3 girlsBorn the day before Thanksgiving

Sisterly loveRiley and KolbyMaci and Kolby

At 32 weeks gestation, Kolbys arms and legs were measuring short.

A variety of testing was completed by a high risk OB through Riverside Hospital.

When testing revealed no clear answer, our family decided to wait and see what God had planned for our family.

Kolby was born needing oxygen and other supports to keep her healthy. Her mommy was unable to hold her until 6 hours after she was born. She was transported to Nationwide Childrens Hospital via ambulance as her daddy followed close behind. Kolby was in the NICU for 17 days. During this time she was diagnosed with Langer Giedion Syndrome, or the fun way to say it: Tricho-rhino-phalengeal syndrome. She is such a rare gem as there are less than 100 documented cases in the world.

What is TRPS Type 2 or Langer Giedion Syndrome?Tricho stands for hair. She has very thin hair that really doesn't grow, and will begin to fall out after the age of 10. We have already started collecting some very cool hair bandanas. For those of you who have little girls that have donated their hair, that is so very special to us. Kolby might just need some of that someday.

Rhino stands for nose. They call her nose bulbous, but we call it her little piggy nose!

Phalengeal stands for fingers. According to all the literature, her fingers should be short and fat. Hers are actually long and thin!

Our family calls it the Kolby Syndrome. She has a tendency to make her own path and not quite follow what the doctors want her to!

TRPS Type 2 is a skeletal dysplasia syndrome. Kind of lumped in with dwarfism and a hodge podge of other stuff. She will grow to be an average height of 5ft.ish, it may just take her 80 years to do so! Her bones grow very differently than ours. The ends of her bones grow with rounded edges. She also has boney growths growing on top of her bones. She has some pretty cool spots if you ever want to see or feel them! Her future will require surgeries as those growths cause limited movement, pain and other complications.

Kolby's dedication verse: May, 2011

Psalm 128:13-18 For you created my innermost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.

She truly is wonderfully made, inside and out!

Though she be but little she is fierce-ShakespeareA big cast doesnt stop me!Just learning to walk!

Popsicles in the play room!I can eat whatever I want!

Even Urban Meyer came to visit!

Kolbys life quote..

Mile 10:

Another Chapter in Kolbys Story

What does a Patient Champion Get to do?

Inspire and encourage others!Photo shoot at Nationwide Childrens HospitalMile announcement at Run FestNumerous Meet and Greet opportunitiesFront page Marysville Tribune articleRace Expo Packet Pickup PartyVIP breakfast on race dayPatient Champion Cheer Zone at Mile 10 with tent and personal Patient Ambassador at our service!Children's Champion VIP Finish after partyMake lots of memories and new friends!

Ways to support Team KolbyWant to Run or Walk?Register at columbusmarathon.comColumbus Marathon Sunday, October 18, 2015 7:30 a.m. Course closes at approx. 2p.m. Full and 1/2 Marathon Start and finish at North Bank Park

Become a Tshirt or race day sponsor!If you know of a small business owner ($50 donation) or larger corporation ($100 donation) that would like to be a sponsor for Team Kolby shirts or for items needed on race day, let me know! Sponsors to Date:

Minit LubeHeritage ParentingCrossfit 184Wing and a Prayer RunningLighthouse Christian BookstoreTammy Miller, Licensed Massage TherapistMarysville YMCAAdvoKruJenJens daycareAllen, Yurasek, Merklin & Owens- Ruff LLCSweeney SistahsNavin Auto SalesMarysville Primary CareWorth Repeating It

Donate online at: Nationwidechildrens.org and search for Marathon Miracle Mile Patients/Kolby/Team KolbyOrAsk for a print donation form that can be mailed directly to NCH Foundation in honor of Kolby

Our goal:

Life is pretty amazing when we stop and look around. Friends, family and strangers have learned more about Kolby and accepted her no matter where they are in their life journey. If she is able to help just one person to soften their words and thoughts at those who look or seem different, then she has succeeded in life.