Copyright Herkimer Evening Telegram. All rights reserved.
By JOE PARMON-Telegram Staff Writer

CLIFTON, Va. - Six-year-old Emilie has never spent time feeling sorry for her grandfather, Steve Nichols, a 1968 graduate of Mohawk High School who developed Amyotrophic Lateral Sclerosis, commonly called Lou Gehrig's disease, in 1994.

Instead, she has held Steve in awe as he has struggled to beat the odds against this relentless disease that has taken away his ability to speak and walk, and found whatever ways she can to communicate with him and enjoy his company.

Their unique relationship has deeply moved all who have seen it first-hand and it also inspired Steve's wife, Helene, to celebrate their special bond in a new book, "Bigger Than the Sky: The True Love Story of Emilie and her Grandfather."

Published in June by Philadelphia-based Xlibris, the book, which is filled with humor, invites the reader to share an intimate look at some of their times together and details how Emilie and Steve interact and have fun with each other. "Bigger Than the Sky" was named by Emilie who, at age 4, described her feelings for her "bapas" in those words.

Residents of Clifton, Va., Steve and Helene make the trip to Oneonta every six weeks or so to visit Emilie and her parents, Ashlie and Todd Mull, along with their other grandchildren, Todd, age 5, Maggie, age 2, and now their new addition Sophie, who just turned one week old. Emilie and Steve have found many different ways to connect as they enjoy using the computer together, reading together, going for nature walks, or playing hide and seek with all of the grandkids as Steve makes his way around in his wheelchair. Emilie's parents just bought a telescope so star-gazing will be one more thing she and Steve can share.

Emilie has also become adept at helping to care for Steve, including feeding him by mouth or through his tracheotomy tube.

The list of activities the two enjoy together continues to expand. Emilie, who inherited her grandfather's love of tennis, has started taking private lessons in the game from Steve, who has also been teaching Emilie French.

"It's a bond that's become stronger and stronger. It was just there from the beginning, from the first time he held her in his arms and I put her fingers in his hands," said Helene. "She's so very proud of him. She doesn't look at what he can't do but rather what he can do. She's fascinated by him."

The thought of many more good times ahead with Emilie and his other grandchildren have served to strengthen Steve's will to continue fighting the disease, according to Helene.

"His goals are to see Emilie graduate from high school, then Todd, then Maggie and then Sophie," added Helene. "Once he met Emilie, life changed for Steve. He wants to be there for her and to continue on and so he will."

Through the computer, Steve explained how much his relationship with Emilie has meant.

"She has grown up and replaced the things that I've lost. As I become weaker, she becomes stronger. She has learned to take the place of the functions lost to ALS. She has witnessed the degeneration of my muscles and she has taken my hands to hold in her own. And I love her bigger than the sky," wrote Steve.

While Steve has found hope and inspiration through their bond, Emilie has discovered something profound about herself, even at her tender age.

"Steve asked her if she would like to help people with ALS when she grows up and Emilie responded by saying, 'Yes I would. I would like to help people with ALS and plain people too,'" said Helene.

As Emilie grows older, Helene said it will be interesting to watch their relationship evolve. One of Helene's main purposes in writing the book was to record what Emilie has meant to Steve over the last few years.

"I wanted to record this for posterity and hope that she'll always know what a difference she is making in his fight for life and his commitment to the pursuit of happiness," said Helene.

Helene also hopes the book will be a source of encouragement for families going through similar trying times.

"Hopefully this book will share to other families that have a disabled member of the family that even though a person may be severely disabled, it's still possible to have a relationship with them and an important one," said Helene.

(When you purchase this book from Amazon.com - by clicking on the link below - Ride for Life will receive a small portion of the sale which will be used to help fight ALS.)