Wordless (Because speechless sounds cliche) :-)

Karis and her "Aunt" Anna

One of my dear friends, Katie Almy, has a beautiful 13 month old named Karis (which is Greek for Grace).  This past December, Karis was diagnosed with a disease call Krabbe.  Krabbe (crab-ay) is a horrible disease which effects the myelin sheath that surrounds the nervous system, inhibiting nearly all voluntary and much involuntary movements and functions of the body.  We hate Krabbe.

 There are many families affected by this disease in a variety of ways.  The good news is that in the last decade paramount discoveries and advancements have been made in the prevention and treatment of this disease.  We now know that if Krabbe is diagnosed at or before birth, the affected child can have a cord blood transplant which gives them the enzyme they need in order to halt the progression of the disease.  Sadly, the only children that are currently being screened are the siblings of affected children and babies that are fortunate enough to be born in one of the few states that tests for Leukodystrophies at birth.

This past week, I had the privilege of accompanying Katie and Karis to Symposium, which is a week long gathering of the Leukodystrophy medical and affected family community.  Symposium is in Buffalo, NY and presented by Hunter's Hope, a foundation that was started in 1997 by Jim and Jill Kelly after their only son Hunter was diagnosed with Krabbe.  Since my return, many have asked, "How was it?"  Honestly, I feel that I cannot yet answer that question.  I feel like saying something really dramatic like, "It was the best of times, it was the worst of times."  I know that seems silly, but it really was!!

Balloon Launch

On one hand, I got to spend the week with two of my favorite people (Karis and Katie), reconnect with some of the most amazing people I know, and meet many more wonderful families and many of their incredible children.  On the other hand, about 80% of the families who attended Symposium have lost one (and many times more than one) child to Krabbe.  Some of those families have since had other children, and though they were affected by Krabbe, because of family history, were screened at or before birth and therefore were eligible to receive a cord blood transplant.  I must say, the difference between these children and those who had not received a transplant was astounding.

From my first day there, the tears began to flow.  My spirit was moved on so many levels.  First, I was so moved by the number of families there (including Hunter's family) who had lost a child.  Rather than burying the pain, or getting as far removed from it as possible, they were at Symposium, surrounded by children who reminded them of their own.  Their pain was palpable.  In fact, I asked several of them why they were drawn to be there.  It just seemed too difficult.  I was so moved by their answers.  "Because it means so much to be around people who understand."  "We HAVE to help!  We must do what we can to rid the world of this disease."  "I want to do what I can to raise awareness and keep others from having to experience this type of loss."

Trevor and his dad.

Then, there are the families with children presently affected by Krabbe.  Each child was in a completely different place. Some were transplant recipients, many were not.  They ranged in age from 13 months all the way to 13 years!!  Their families are hurting in a completely different way.  They are weary, and many are discouraged from the isolation they feel, from the hopeless words of their doctors, and from the way our society as a whole mistreats families such as these. 

It is very odd for me to feel completely incapable to articulate my thoughts and emotions.  Especially when I want to so, so badly.  As I have prayed through this, I believe that God is showing me that there are some experiences for which words are grossly inadequate.  As much as I would love to paint a perfect "word picture" for all who were not there, I just can't.  It was really and truly a "you had to be there" week.  REALLY.  But, what I can tell you is a little of what I learned from these amazing families and their children: to be grateful for each day, to love well and to make each moment count.  Life is precious, and the very things we often complain about are some of God's greatest gifts to us!

Sweet Jackson

I also want to encourage each of you reading this to take 10-20 minutes to educate yourself on Krabbe, Leukodystrophies and Newborn Screening by visiting www.huntershope.org.  Find out how YOU can be an answer to prayer for one of these precious families.