The Girls' Story

Saturday, November 26, 2011

I know I've told you about a little girl named Ellie Kate before, but I'm crazy about her and her sweet family. Here are pictures of Ellie and her older brother Conner and her younger brother Henry.

Ellie Kate


Now she has a baby sister named Lucy Belle.

Lucy Belle

Brian and I are hosting a silent auction in our home in two weeks with all proceeds going towards Ellie Kate and Lucy Belle's medical bills.

We could absolutely use your help! Yes! You! We are looking for donations of items in our silent auction.

Think themed gift baskets, small electronics, items from direct sales companies, etc. Really, anything you want to donate, we can auction off. We can also provide you or your business with a receipt of your donation which is a tax deduction.

Maybe you can't donate, but someone you know can? Please pass along this story. Our goal is to help the McLaughlins in a big way this Christmas.

Please take a moment to read the girls' story from the words of their sweet momma, Ryan. May your heart melt for this family.

Michael and Ryan McLaughlin are the proud parents of four children – Conner, age 8; Ellie Kate, age 5; Henry age 3; and Lucy, almost two months.  Life for the McLaughlins is anything but normal, as both of their girls suffer from a rare genetic disorder called Non-Ketotic Hyperglycenemia, also known as NKH, or Glycine Encephalopathy. 

NKH is an inherited disorder that is considered terminal.  Most children with this disease do not live to see their first birthdays. There are actually less than 500 world-wide living with NKH.  This disease causes seizures and apnea, which both girls suffer from.  Since it affects their brains, it affects every part of their bodies and eventually causes vision problems, heart problems, GI issues, low immune system, mental retardation, and ultimately death. 

By God’s goodness, Ellie Kate will be six in December!  Ellie Kate no longer eats by mouth, but through a feeding tube.  She does not walk or talk.  Ellie Kate also has heart problems, gastrointestinal issues, and severe vision problems.  Ellie has spent time on the ventilator and has also spent approximately fifteen months in the hospital throughout her short life.  She attends special education classes where she receives physical therapy, occupational therapy, and speech therapy.  Ellie also receives these therapies in an outpatient setting.   She takes nine separate medications throughout the day. 

When Ryan was fourteen weeks pregnant, the family found out that baby Lucy was affected by NKH as well.  Ryan underwent CVS testing so that the family could prepare for early treatment and intervention.  God has been so good and Lucy is doing much better than the doctors anticipated.  She spent the first three weeks of her life in the NICU and is now home on an apnea monitor.  At this point, Lucy is only on four daily medications, but that will increase as she grows. 

God has forever changed the hearts of Mike and Ryan, as well as those of their family.  Their precious girls have opened their eyes to the world of special needs and the Lord has called them to reach families like their own, who are so easily forgotten. With His leading, the McLaughlins started the Hope Link Support Group, along with their dear friends Scott and Amy Haas.  Last year the OKC Hope Link Foundation was put into place as well.  Hope Link’s goal is to reach out to families whose children suffer from serious, rare or undiagnosed disorders.

Mike and Ryan have one request in the sufferings of their daughters – that the Lord Jesus would be glorified.  As Job so honestly states, “Though He slay me, I will trust in Him.”  Although raising two terminally ill children is daunting financially, spiritually, emotionally, and physically, Mike and Ryan know without a doubt that God will fulfill His promise to cause ALL things to work together for good and for His glory.
If you are able to donate to this incredible family through a donation for the auction or with a monetary donation, please shoot me an email at 106 of a year of writing.....

photos courtesy of Legacy 49 Photography

1 comment:

  1. I'll pass this along on my FB page and on my blog as well. What a precious, precious family.


Powered by Blogger · Designed by Pish and Posh Designs