Portsmouth, NH The Bergeron brothers need a wheelchair van
PORTSMOUTH — Debra Waters says her two grandsons, Nicholas and Dylan Bergeron, both with a rare genetic condition, hardly ever complain.
“Only once (Nicholas) said to me, ‘Meem, I would just like to walk again,'” she said.
When Waters saw her daughter struggling to lift her sons in and out of her car – Nicholas is now 13 and Dylan is 12 – she knew she had to help.
The Portsmouth brothers have Duchenne muscular dystrophy. Almost always present in boys, the genetic condition is characterized by progressive muscle degeneration and weakness due to a lack of the protein dystrophin. The life expectancy of people with DMD is increasing with modern cardiac and respiratory care, with survival into adulthood and even up to 30 years or more becoming more common.
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Waters, a 63-year-old Hampton resident, has seen firsthand the impact the boys’ affliction has had on their mother, Waters’ daughter, Kerri Bergeron, and on their daily lives. Transport has become a major challenge: as the boys get older, it becomes more difficult to transport and lift them to and from medical appointments, as well as in their electric wheelchairs.
That’s what prompted Waters to create an online fundraiser soliciting donations for a handicap-accessible vehicle for the Bergerons.
“They taught me to never give up. To keep fighting, and that’s exactly what they do every day,” Waters said of her grandsons. “And they’re not complaining.”
Since the fundraiser began, Waters and her family have received more than $25,000 in donations. However, the estimated cost of a vehicle capable of accommodating both boys is $80,000.
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Waters said her daughter, who hasn’t worked for four years to care for her sons, is a single mother. At one point, Waters said, Kerri Bergeron applied to a charitable foundation for a pickup truck, but was not selected.
The woman who was chosen to receive the van has three sons with DMD, she said. Waters recalls Kerri Bergeron finding out who had been selected for the van, learning the woman’s story, and saying she and her kids deserved it.
Waters has marveled at her daughter’s strength in the years since Nicholas and Dylan were diagnosed with DMD. “Being strong even when you want to give up. You continue to be strong because it’s your life there. They are his world,” she said.
How did the family learn that Nicholas and Dylan had DMD?
Although she has six grandchildren, Waters admits that Nicholas and Dylan hold a special place in her heart because of how they deal with their affliction.
“I want to see them flourish and see the things they can possibly do,” she said. “I just want to see them go out and see the world.”
Nicholas, a seventh year student at Portsmouth Middle School, is a shark movie fanatic and a member of the school’s bowling club. Dylan, a fifth-grade student at Dondero School, loves dinosaurs and monsters and is a talkative and naturally curious child, his grandmother said.
“Nick is very witty, Dylan is very outgoing,” she said of the boys.
When he was 4 years old, the first signs of muscle weakness led Nicholas to undergo a biopsy. He lacked dystrophin and was diagnosed with DMD.
“When we found out Nick had it, we were very distraught. We just said, ‘Well, let’s make his life as productive as possible and make sure he likes what he has,'” Waters said. “We’re trying to keep them busy.”
Waters said Nicholas had accepted his diagnosis.
“Only once did he say to me, ‘Meem, I would just like to walk again,'” she said.
Dylan started showing similar symptoms around the age of 6.
“Nick has been in a wheelchair full time for at least three years. Dylan, the progression (of the disorder) was a little slower,” Waters said. “He can still walk but he can’t get up from a sitting position, he can’t climb stairs.”
DMD Symptoms, Information
According to the Muscular Dystrophy Association, Duchenne muscular dystrophy (DMD) affects six in every 100,000 people in North America and Europe, usually starting at a very young age.
The organization also reports that children with DMD typically have trouble jumping, walking and running, as well as enlarged calves, an inward curvature of the spine and a “waddling gait”.
“Later, the heart and respiratory muscles are also affected,” the organization says of the genetic disease. “Progressive weakness and scoliosis lead to impaired lung function, which can eventually cause acute respiratory failure.”
Carriers of DMD are female and the disease is transmitted from the mother.
Waters feels that her daughter and grandsons’ need for a handicap-accessible vehicle grew exponentially as Nicholas and Dylan got older.
“Between their weekly therapy appointments and going to Dartmouth-Hitchcock for their checkups, I realized she couldn’t do this anymore,” she said of her daughter.
The boys’ enthusiasm for life has never wavered since their early childhood diagnoses. Nicholas and Dylan have taken two trips to Walt Disney World with their mother with the help of the Make-A-Wish Foundation in recent years, though Waters and his family want to continue providing the brothers with meaningful experiences as they keep hope for a scientific breakthrough.
“I think we’re just praying for a cure,” she said.
Donations are accepted at gofundme.com/f/Help-get-these-boys-a-wheelchair-accessible-van.
Information on Duchenne muscular dystrophy: mda.org/disease/duchenne-muscular-dystrophy