Wikipedia’s definition of Duchenne Muscular Dystrophy (DMD) is 290 words long. Michael Hope’s definition, at age 11, is about thirteen: “I could swim and play soccer more,” he says, “if I didn’t have [DMD].”
Michael’s parents, David and Tricia Hope of Argyle, didn’t learn their son had DMD until he was three and a half years old. “He was falling a lot and couldn’t climb stairs,” says his mother, Tricia, “but it wasn’t until my husband and I were in his Sunday school class that we realized how different he was from the other children his age.” A Pediatric Neurologist at Scottish Rite Hospital confirmed their worst fears, that Michael had the most prevalent form of muscular dystrophies, one that affects one in 3500 males, and which is known by the rapid progression of muscle degeneration, eventually leading to loss of ambulation and death.
“Duchennne Muscular Dystrophy,” Tricia explains, “means he is missing the glue in the muscles that makes them work.” The disease affects the large muscle groups, first, ultimately compromising the respiratory and heart muscles. The typical life expectancy is 20 years.
“For me,” says Tricia, “the diagnosis was very upsetting because I’d seen my older brother pass away at age 12 of DMD. It was a very big challenge for me to hear my son had the same problem and I have gone through every emotion,” she says. “Ultimately, God has shown me this is his child, not mine. Now,” she says, “I see it as a privilege and an honor to have Michael each day he is with us.”
Michael is about as typical as an 11 year-old boy can be: a smattering of freckles, a shy, sweet smile. As his Dad, David, says, “Michael is normal in every way, with the hopes and dreams every kid has at this age. The only difference is his muscle function and mobility.”
True to his age, the lively fifth-grader responds immediately when the talk turns to some of his favorite subjects, like his Hot Wheels collection, Lamborghinis, hip-hop music or his dream of becoming a Veterinarian. He unabashedly demonstrated the variety of sounds produced by a Yamaha keyboard, then could be overheard singing Jingle Bells to no one in particular, as his parents continued to share their family’s story.
A good student and an active kid, who’d be surprised to hear Michael’s favorite class is ‘PE’? Or that he’d recently confessed his frustration with perfecting a ‘crazy eight’ basketball move? “Well,” his mother said, “I imagine that might be challenging in your wheelchair…” “No, I’m not IN the wheelchair doing that,” he exclaimed.
“He is an amazing boy,” says Tricia. “He doesn’t feel sorry for himself. We’re not sure he fully understands his challenges but he always has a smile on his face, cuts up with his Dad and his friends, he’s fun, he’s witty, he’s a joy!”
Michael still walks, swims, four-wheels and tackles his regular 5th Grade classes but the DMD is progressively compromising both his mobility and his energy. Neither the 29 medications he takes a day nor the power wheelchair he got at about the same time as his 11th birthday will stave off the inevitable and so it was, earlier this year, Michael asked his parents if it was time for him to make his wish known to the Make-A-Wish Foundation.
The Foundation, which has been granting the wishes of children with life-threatening medical conditions for almost 30 years, helps fulfill children’s dreams. “Make-A-Wish had encouraged us to have Michael make his wish while he was still able to fully enjoy it,” says Tricia. “So last February, we sat down with them.”
Make-A-Wish Volunteer and Michael’s Wish-Granter, Terri Albers Griffin said, “Michael knew right away exactly what he wanted: ‘I want to go on a cruise and swim with dolphins!'” But the granting of Michael’s wish wasn’t revealed to him until nine months later, November 24th, at a Pep Rally at his school.
Argyle Intermediate School Principal Conrad Streeter, said, “The Pep Rally was the highlight of my career. We are proud and delighted to have Michael on our campus and we had over 300 students, staff, family members and friends sworn to absolute secrecy about this big surprise for Michael. We were all excited to be included in the celebration.”
The High School Band came to play the Intermediate School’s fight song, as each child lined up by grade, to file in one-by-one, a Hawaiian lei placed around their neck. Michael was the last to enter, following the rest of his 5th grade class. Classmate Abbey Cone sang the Rascal Flatts song, My Wish, as photos of Michael were shown. Finally, the Make-A-Wish Foundation revealed the plans made for Michael and his family on a Royal Caribbean cruise, with excursion arrangements for dolphin-swimming at the stops in the Bahamas, St. Thomas, Tortola and St. Marten.
Michael’s older sister, Haley, age 13, is hugely relieved the surprise is finally out. “It’s so hard keeping a secret,” she exclaimed. Haley struggles with her brother’s condition, with his getting most of the attention and the burden of losing him. “She is always looking out for him, though,” says her mother. “Haley has a huge heart and a willing spirit many others her age don’t have.”
“We’re thrilled as a family to have this opportunity now,” says David of the cruise, “before Michael is any further limited. Our goal is to give Michael the highest quality of life we can while he can enjoy it.”
Tricia adds, “Our hope, of course, is that a cure will be found but, if not, our hope is in Christ, and we decided a while ago to make as many memories as possible because we can hold on to them forever.”
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