Monday, August 5, 2013


Katie, my great niece, was born in 2006 with several rare heart defects resulting in the right side of her heart not working.  This required intensive medical care just minutes after her birth.

Katie after her Glen surgery @ 3mos.

Her specific congenital defect is Ebstein's Anomaly, a pulmonary atresia and left ventricle non-compaction (medically speaking: Hypoplastic Right Heart Syndrome (HRHS), one of the most severe forms of congenital heart defects). 
Overall, Katie has undergone 10 major and minor surgeries (recently received 840 'courage beads' (check this out if you've never heard of this group...they were on necklaces/bracelets representing each invasive procedure success.)

Her critical yet successful surgeries helped redirect blood flow in Katie's heart so she could continue to grow, and each phased surgery gave Katie the chance for a normal, happy life for as long as possible.


But, as of July 3, her doctors determined there are no other medical options to prolong her life, so Katie has been placed on the heart transplant list as a status 1B outpatient.  The heart transplant team will be reaching them via pager as soon as a 'new heart' becomes available...any hour of the day.
She's living life as she knows best, inspiringly smiling every day and uplifting us with her quick ability to laugh while reading, drawing, dancing and dressing like many different princesses!  We've been celebrating her starting first grade this school year...a large milestone for her and her family.

MoMo and Katie
Katie's grandmother, Momo, is my sister, Connie.  She and I are working with several local friends of the family in preparing for various fund raisers which will help them as they go supplement their costs (transplants are costly as are on-going medicines/treatments that will be required to keep her body from rejecting the heart.

The family is being helped through COTA (Children's Organ Transplant Association)...and a very close friend is heading up all the fund raising planning, volunteers and financial details.  What a great friend she is!

I recently participated in my first COTA fund raiser...a canvas painting event...38 people came to paint and support Katie!

my KatieCanvas
Katie's right thumbprint is on my heart...she signed & handprinted the back  ;)

Canvasses Completed!

I'll be posting more about other events but wanted to share the background now. 

(I'm hoping to have a sidebar button that will go directly to the website where donations can be made to COTA and then properly funneled to the family on an as-needed basis (they have a tax id).  The website is shown at the bottom of the first collage above).

If you can join us to raise funds in some small way, that would be awesome. 

But more importantly, please add Katie (mom, Kerri; daddy, James; little brother, 2yo, Ryan) to your prayers.  Our Lord hears the prayers of the righteous and He's blessed her with many miracles along her path.



Connie (MoMo) said...

Thanks so much Susan. I love you dear Sister.

Robin @ Be Still and Know said...

I bookmarked Katie's COTA site.

That painting canvas fundraiser looked like fun...


Kim said...

Excited to see how many opportunities God is providing for folks to help! Will continue praying for Katie and the family, and for His provision.

Theresa said...

Praying for a new heart for Katie and for the whole family.

Debbie Petras said...

Wow; I will pray for Katie and her family. I was born with a congenital heart defect way back in the early 1950's. They had to wait for technology to improve before I could have my open heart surgery. But I did well and became a cardiac nurse. I know how difficult it can be to wait for a heart as we had several patients waiting. Many went on to productive lives and I pray that your Katie will be one of them too.