Family touched by ALS finds joy in the small things

Della Larsen has a saved voicemail message on her phone from her late mother that she treasures. “Her voice is more powerful than a photo,” she said.

Della’s own voice has become more powerful since her 2023 diagnosis with amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. ALS is taking her voice from her but not her ability to communicate.

Della Larsen holds up a book she will record herself reading for her grandchildren, who have not been born.

For her future grandchildren, Della has created a unique, powerful, and forever gift — recording herself on video reading 30 children’s books. She does not have grandchildren yet but went ahead with the recordings while she is still able to speak.

Della and her husband, Ron, met while playing adult intramural volleyball with a large group of friends at a sports club in Hingham. Eventually Ron asked Della for her number and she gave him a bum number. Once they straightened that out, they started dating and married three years later. They will celebrate their 30th wedding anniversary in May of 2025. Their children, Michael, Matthew and Katherine, all attended the Canton Public Schools.

Della’s desire to become a teacher started when she was a teenager babysitting a little girl who had Down syndrome and helped her put a puzzle together. “She looked up at me with such joy,” she recalled. “I wanted to do this for the rest of my life.”

Della has a degree in special education from Boston College and started her career teaching children with autism before becoming a kindergarten teacher. She taught kindergarten at the Joseph Lee School, the Mattahunt School, and the Charles H. Taylor School, all in Boston. She retired in 2020 but maintains an internet resources business for teachers, working when she can.

Della first saw the signs of ALS in her body in August of 2022. “I was walking my dog and my flip-flop on my left foot was dragging,” she said. “I thought that was weird.” The dragging became a limp over time that was not painful at all. She ignored the limp for months until others noticed it.

She called her primary care doctor but could not get an appointment for two months. In her office, the doctor asked Della to walk on her heels, but she couldn’t. The doctor also asked her to hop on each foot, but she could only do so on her right foot. “She knew something was wrong,” Della said.

The PCP referred her to a neurologist, who examined her and recommended a battery of tests, which took months to complete. During that time, Della was losing her strength. Out of concern, Ron called the neurologist, who arranged to have her admitted to Newton-Wellesley Hospital for testing. On April 20, 2023, Della received her diagnosis of ALS and was referred to Mass General Hospital, which Ron said is the premier ALS center in the United States. Medical personnel have been working with the Larsens since that time.

Michael said that when his mother was diagnosed, the worst part for her was telling people. “It was,” Ron confirmed. “It was much worse to tell the kids that she had ALS than it was for us to be told that she had ALS, and that was devastating being told.”

Initially, Della wanted to make videos for her three children to watch when they found themselves in a variety of situations, but emotionally it was too difficult for her to do. Instead, she decided to record herself reading to her grandchildren. “She wanted them to know that she loved them,” Ron said.

Della used to say that she wanted to have Grandma Camp at her home, where her grandkids would visit and sleep in a large bunk room, paint rocks, build things, and read books. A redhead herself, she wanted 10 redheaded grandchildren. “But I knew that wasn’t going to happen, so I thought I’d read them books,” she said.

“A lot of them are the books that obviously we read to the kids when they were younger,” Ron said.

The books she recorded include Click Clack Moo, Where the Wild Things Are, Mike Mulligan and the Steam Shovel, Swimmy, and The Gingerbread Man. The recordings are on her computer.

“She created QR codes for each of the books,” Ron explained. At the beginning of each video Della tells her grandchild, “Okay, grab your book and let’s get started.” That is followed by Della reading the book with her grandkids reading along.

“My hope is that the kids will know me through the videos,” Della said. “And for our kids to hear her read to the grandchildren,” added Ron.

“For me, being a kindergarten teacher, reading to children is a joy,” Della said. “It’s something I could do even if I’m not here.”

Michael added that voice banking is a concept that is introduced to ALS patients soon after their diagnosis. Della spoke into software as a way to preserve her voice, “banking” herself saying a number of things so that her children can listen to her voice in the same way that she can listen to the recording of her mother’s voice. The language is banked through Children’s Hospital, where there is an augmentative communication center with software called A cappella.

Lou Gehrig was diagnosed with ALS in 1939. Della wants people to know that she has the same prognosis as Gehrig. “There is no cure,” she said. “There’s not enough funding for ALS. When you think about it, what [other] disease hasn’t improved in 80 years?”

Ron said that for every person who is diagnosed with ALS, another patient dies. “Although the total number may not continue to grow and grow and grow, it’s 100 percent fatal,” he said.

The Larsen family has participated in fundraising efforts for two Massachusetts-based organizations: ALS One, which funds research at institutions such as the Sean M. Healey & AMG Center for ALS at Mass General, and Compassionate Care ALS (CCALS), which assists with direct patient care. “They’re there for you for whatever you need,” Ron said, listing wheelchairs, adaptive equipment for the bathroom, and ramps as some of the items that CCLAS can provide.

The extended family has raised funds to help those with ALS through events such as the Boston Marathon, which two of the Larsens’ nieces ran, and the Falmouth Road Race, which Michael and his fiancée and Matthew and his girlfriend ran in last month. Along with nearly 150 other runners, the group raised close to $500,000 for ALS One. Another group ran the race to benefit CCALS, raising $375,000.

Michael and Matthew have participated in the past two Falmouth races, raising more than $50,000 between them, while Della recently took part in the wheelchair division for CCALS. “She was pushed in a special chair — similar to what the Hoyt family does — by a gentleman, Jim, whose son passed away when he was 26,” said Ron.

Della knows two other people in Canton who have ALS and participated in the ice bucket challenge 10 years ago. But until she was diagnosed, she and her family did not know much about the disease. “It’s more common than you might think,” Ron said.

“There’s no familial history, there’s no rhyme or reason for it,” Michael said. “You just get it.”

“ALS happens to families,” Della said. “And it’s the extended family, too,” Ron added. “Everybody’s impacted by those three little words.”

“ALS is awful, but it brings out the best in people,” Della said. “My children have had a front-row seat to the very best of humanity.” Ron said that everyone from the medical staff at MGH to those affiliated with CCALS, ALS One, and the ALS Therapy Development Institute has been phenomenal with the family.

“We’ve benefitted a lot from people making an effort for us,” Michael said. “It felt like a lot of people were looking for a reason to do something good.”

People have sent them ice cream and Lays potato chips. A Connecticut woman who they don’t know has sent at least 50 postcards to Della after seeing her reels on social media. This past spring, students at CHS held an ice bucket challenge for the Larsens, and the town of Canton in general has been very supportive to the Larsens and the other families in town who have ALS.

A stranger recently gave the family a wheelchair van to use to transport Della. But since the Larsens live in a hilly area and the van sits low to the ground, it was challenging to operate; so an asphalt company whose owner had ALS repaved their driveway at no charge, allowing them to transport Della where she needs to go. An uncle also renovated the Larsens’ bathroom.

Michael will be married in February, and his sister Katherine will graduate from college in May. “[ALS] has made us appreciate all the events with a heightened sense of joy,” Della said.

Costs for Della’s care are high, and donations are greatly appreciated via gofundme.com/f/dellas-als-journey. For more information on the organizations the Larsens support, go to ccals.org or alsone.org.

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Posted by Mary Ann Price on Sep 13 2024. Filed under Features. Both comments and pings are currently closed.