When Katie and Elizabeth Shambo were born in 1992 and 1995 respectively, their parents welcomed them to a log home that their dad, Joe, built for his wife, Maureen and their family. Joe drew from skills he learned from his dad, a high school teacher and licensed electrician, to masterfully construct his dream home. He was a devoted father and husband and strong handyman who ran marathons and coached softball.
When they outgrew their log cabin in the woods, they moved into their dream home in Merrimack, NH in 1996 and became fast friends with several neighborhood families. Though Joe's professional career was in the banking industry, he was called upon frequently to help with electrical repairs and installations and was happy to assist in any way possible. So it came as a surprise that one day, while poised on top of a ladder helping a neighbor with a simple repair, Joe suddenly lost his grip and dropped a wrench to the floor. During that time, he had also noticed difficulty with clipping his fingernails and other tasks requiring manual dexterity.
He went to see a doctor. Carpal tunnel syndrome? Arthritis?
ALS.
When the neurologist handed Maureen pamphlets about ALS, she ripped them up and threw them in the trash as they left the clinic after they got the news just two days before Christmas of 1998. Admittedly, she didn’t know what ALS was. "Whatever ALS was, I couldn't fathom my healthy, active husband facing a diagnosis of such magnitude. I searched the internet and repeatedly saw the same prognosis: 3-5 years. 3-5 years. 3-5 years.” Katie and Elizabeth were just 6 and 3 years old. "This can't be happening!" Over the following seven years ALS continued to take one ability after another from Joe.
From running across the finish line of the Boston Marathon to exuding joy from his wheelchair at his daughter’s cheerleading competitions, Joe, who was cruelly robbed of so much because of ALS, prevailed with the help of his family. Surrounded by high-tech chairs, human-sized slings, and household transportation systems, Joe, Maureen, Katie, and Elizabeth, created a daily routine that gave hope they could maintain a life with ALS. Each day, Maureen cared for Joe, got the kids to school, put in a full day's work, and then returned home as caregiver and mother.
“Daddy has bad hands” Katie recalls saying to her mother when she was in first grade. “I don’t remember the moment I was told my dad had ALS but I remember feeling protective of him.” Katie couldn’t do much to help her dad, but she always volunteered when she could: setting her father’s motionless hands on his lap, buttoning his shirts, and completing homework by his side. Life with ALS became their new normal.
Maureen swoons with happiness when she mentions her husband’s "big, gorgeous smile". She and Katie beam when asked about Joe, and easily remember his excellent softball coaching skills, funny personality, and selflessness. The family never let ALS tie them down. Katie’s cheerleading competitions invited travel opportunities around the country, and they happily went. “He was a rock star everywhere he went,” says Maureen of Joe on their adventures in their wheelchair van, cleverly named the “magic bus.”
To raise funds for Joe’s care, neighbor and close friend, Kevin Cotter, organized a golf tournament, which Joe enjoyed so much that it became an annual event and brought together family and friends who met and grew closer each year. Planning the golf tournament was like planning a wedding and Joe was happiest when the weekend finally arrived and his friends gathered together for one cause. “I’m sorry he didn’t live to see the Ice Bucket Challenge because he would’ve loved watching the daily postings from all over the world. He would have gotten a kick out of seeing some of the creative ways in which people participated” Maureen smiles.
A few years after his diagnosis, the Shambos visited an early lab of the ALS Therapy Development Institute (ALS TDI) and became friends with another incredible family dedicated to seeing the end of ALS—the Heywoods, who founded ALS TDI in their basement after Stephen Heywood was diagnosed just months before Joe.
After Joe passed away in 2005, shortly after hosting their final golf tournament. Maureen, Katie and Elizabeth found more ways to dedicate themselves to help find a cure for ALS. “I do this in Joe’s memory,” says Maureen when reflecting on the White Coat Affair, her favorite of the many ALS TDI events she and her daughters attend. "The staff are some of the brightest and friendliest people I've worked with and it was a no-brainer to support ALS TDI. Knowing the lab spends 87c of every dollar on research toward finding a cure is the reason I tell my friends, when they ask how they can help, to make a donation to ALS TDI.”
For the last two years, Katie has challenged herself by riding in ALS TDI's Tri-State Trek, an annual 270-mile cycling event, and plans to return to the ride each year. “It’s like therapy,” she says. Katie recalls how riding up and down hills for three days gives you space to reconnect with lost family and friends. When pushing through a steep slope, Katie looked up at a photo of her dad attached to her handlebars. And at the end of each day, riders from different backgrounds reunite as a family who knows ALS too well.
The Shambos unfortunately understand exactly how ALS ambushes a family. But they also know how family can reclaim hope together. With radiant smiles they find community in local ALS-related events throughout the year. They're always eager to do anything to support a cure so, eventually, we can live in a world where no family has to go through ALS again.