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.
ElizaThis 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: