Hope This Christmas

Thursday, December 8, 2011

Nurses, doctors, tests, blood work, IVs, more tests, scans, predictions, assumptions, medicine, more medicine.

In and out of Children's Hospital.

I can't imagine life like that.

But there are many people who consider the above stream of words normal.

There is a little girl who has lived much of her life as described above. In and out of the hospital. On and off medication. Her name is Ellie Kate and she lives with a very rare and very serious condition called NKH or Non-Ketotic Hyperglycinemia. 
NKH is a rare and terrible disease, and is considered terminal. Most children who suffer from this disorder die within the first few months of life. Most suffer from severe brain damage, developmental delays, and a variety of other physical ailments.  (Courtesy of Ellie Kate's care page.)

Ellie Kate just celebrated her 6th birthday, and she is the reason that I am in love with Jesus.

As a person who doesn't watch the news and avoids all things painful or emotional because I'd rather live in my world of semi-peace, I'm not sure how Ellie Kate got a hold of me, but she did.

I questioned God, creation, the world, you name it. I was mad about it. I didn't understand why in the world God would ever allow one of His children to be born with such a terrible condition.

But, He is so good, and has brought me so far all because of this beautiful little girl. Ellie Kate now has a sister, Lucy Belle, with the same condition. The McLaughlins also have two beautiful and healthy boys, Conner (8) and Henry (3).

Ryan Elizabeth McLaughin, Ellie Kate's momma, is a women with a passion for Christ in the midst of the chaos she lives in. The Lord's providence reigns over this beautiful family for sure.

Ryan and her friend Amy Haas created an organization called Hope Link with the goal to connect and provide support for other families with children who suffer from rare, serious, or undiagnosed conditions.

Hope Link has grown into a beautiful community of families all struggling through the same pains of living life with a child (or sometimes children) with serious medical conditions, many of which are considered terminal.

This year we are asking for you to help us provide hope for the families of Hope Link.

We asked for Christmas wish lists from each family with the promise to get a few things off each list, but we have a bigger plan than just a few things. We plan to fulfill every item on every wish list this year, but we sure can't do it alone.

I'll admit, looking at the list makes me think there's no way we can pull it off. But I know our God is good and great and bigger than we can imagine.

Last year, we were able to provide the only Christmas presents some of these families received, and we can't wait to do it again this year.

So are you ready to spread a little hope this year for some families who just need to be loved on?

Here's how you can help:

Go to this evite invitation.

Click on the tab that says, "What to Bring"
There you'll see our full list of needs.
Prayerfully consider what you can do to help.
There are items ranging from a few dollars to hundreds of dollars.
Scroll to the very bottom of the list and click on the button that says "Select an Item to Bring"
There you'll be able to sign up for an item that you can either ship directly to us or drop off at the address on the evite.

Please share this story and the evite with your friends, your family, your coworkers, anyone who would be willing to help.

Anyone can sign up to donate an item.

All items need to be dropped off or received via mail by Tuesday, December 20th.

Thanks for providing a little hope this Christmas. Your gift will truly bless these families.

.....day 118 of a year of writing.....

More notes about each family: (This is the information I received with the lists from each family.) Please note that many of these families are saving for some form of tablet (ipad, ipad2, android tablet, etc). Many therapists are using this technology with these children to help them communicate. 

The Hart Family: Brock (age 3) suffers from Leukemia and Invasive Aspergillosis

The Green Family: Alissa (age 6) suffers from Degenerative Neuromuscular disease like MD, although undiagnosed 

The Hanson Family: Ellery (age 2.5) suffers from Phelan McDermid Syndrome and Intestinal Lymphangiectasia 

The McNeece Family: Kaiden (age 2) suffers from an undiagnosed neurological disorder

The Schoffner Family: Logan (age 8) suffers from a rare and life threatening genetic disorder called MECP2 Duplication. He is a beautiful gift from God. He enjoys life and has the sweetest disposition. He functions at a two year old mental level and has lots of physical disabilities. His best friend is Elmo. 

The Spencer Family: Aidan (age 9) suffers from Sensory Processing Dysfunction and Aspergers Syndrome. 
Avagrace (age 7) suffers from Lennox-Gastaut Syndrome
Breya (age 4) suffers from Benign Tumor Syndrome

The McLaughlin family: Ellie Kate (age 6) and Lucy Belle (newborn) suffer from NKH 

The Rayburn family: Olivia (age 2.5) suffers from Dravet Syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI). It's a rare and catastrophic form of epilepsy for which there is currently no cure. 

Maria Hiltebrand (mom) and Ashton Koerner (age 1) suffers from NKH

The Williams family: Kali suffers from microcephayu, agenesis of corpus callosum, under development of the cerebellum. 

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