Sunday, November 7, 2010


My husband and I are not strangers to having grandchildren with serious medical conditions. I have posted the story of our granddaughter Averi, who had a genetic disease called Osteopetrosis. She had a bone marrow transplant which cured this disease; but the side affects from the transplant and the drugs have left her blind and a little developmentally slow. She was in the Primary Children's Hospital's intensive care for over 5 months. We have great hope she will catch up in her development. She can play the piano by ear; which is such a joy for us all.
We also have a granddaughter who is now 12 years old and she had an  enlarged heart as an infant and was also in the Primary Children's Hospital for 2 months. She is amazing and doing well.
We often asked why do these little ones have to suffer so much; but in retrospect many lessons were learned, faith increased and peace did come through our Savior Jesus Christ. These are angels that bless our lives.

Let me introduce you to Eliza, she is the daughter of our Nephew and Niece, Callahan and Nikki Williams. 
 This precious little one has a disease called  Metachromatic Leukodystrophy thus the initials MLD. This a progressive and terminal disease. I first met Eliza when she was around 18 months old. At that time she was a busy adorable little girl doing normal things for her age. It took a while before she was finally diagnosed with this disease. Her physical state started to deteriorate and after a while she started to walk less and began crawling more. She could no longer run or jump. Her condition continued to deteriorate and she was diagnosed with other conditions at first. In 2007 about a month after her final diagnosis of MLD Eliza lost her ability to crawl, sit up, talk and eat independently. She now has a feeding tube. She can no longer see but she does respond to music and sounds. She loves to have books read to her.
Callahan and Nikki are incredible parents. They have been blessed with another little one; which has brought a great deal of joy to their lives.

 Eliza and her sister Caroline

Eliza's parents have done some incredible things to raise money for further research on this devastating incurable disease. They also started book libraries in Eliza's name. It is a great service activity. Our ward collected  and donated 75 children's books to Eliza's Library. These books are being placed all over the world. Eliza just had her 17th Library opened. If you are interested in doing this kind of activity in your church or community you can read about how to do this on Eliza's link.
Here are some thoughts by Eliza's mother:
"It is amazing how much MLD has changed our lives; we hope it has changed us for the better. Eliza has taught us how to live life to the fullest and not take anything for granted. We get excited about the smallest things- smiles, sneezes, and her little stretches as she yawns. She has touched countless lives, without being able to say a word. She is truly a silent example to all who come in contact with her. We feel fortunate to be her parents and to learn from her. She has taught us far more than we will ever teach her."
Take a few moments to read about Eliza; you will be happy that you looked into Eliza's world:



Sue said...

What a touching story, and Eliza is a lovely child. Thanks for sharing her with us.

Her parents seem wise beyond their years, and I think the library is a wonderful idea.


The WIlloughby Family said...

LeAnn, Eliza is a beautiful little girl!!!! Thanks for sharing her story. Her family seems so strong and so full of courage. Amazing!

Jocelyn Christensen said...

What what a lovely little spirit...and a wonderful story...Thank you so much for letting me know about this...I love the library idea and hope to do that for someone else!

Sue said...

I was so touched by this post, but please know I will be praying for Eliza and her family as well as your grandchildren.
Eliza is absolutely beautiful, and I clicked and read her story. There are a lot of things I don'r understand about life, one thing I find comfort in is this ... God knows exactly who to trust with His precious children, and He never makes a mistake. I have always clung to these thoughts .
Thank you for introducing me to this beautiful family, I have book marked their site and will be checking with them.
Hugs, Sue

singing/granny said...

Thanks for sharing Leann. My heart goes out to you and your sweet family. Hugs and Blessings! Melody


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