Imagine watching your child take those first steps, and then preparing for him or her to maybe never walk again. That’s what many parents face, if their children have a neuromuscular disease. That’s why South Dakota’s Muscular Dystrophy Association works hard to help families. On Friday, MDA will hold its annual Toast to Life gala. It’s an effort to raise money for treatments and life-saving cures. Several families will also share their stories. That includes Haberman family, and a real life nemesis that is no match for their little boy.
“Let’s open this,” Isaac Haberman said.
Isaac has all sorts of toys to keep him occupied, including LEGO sets. To the casual observer, they may appear to be just that. To Isaac, the toys — which feature Batman and the Flash — make the little boy feel strong like a superhero.
Margaret Haberman: “Isaac, when did you start like superheroes? I feel like he’s always liked superheroes.”
Isaac: “I do!”
The four-year-old likes to wear capes and masks, but for the last two years, Isaac has put on a brave face to fight a villain, trying to overtake him.
“He started doing less and less and children don’t do that at age two. They go from walking to running, from running to jumping,” Christopher Haberman said.
Everything came to a halt when Christopher and Margaret noticed Isaac’s gross motor function was declining.
“We got the proof in the blood work something was terribly wrong,” Christopher said. “We see massive amounts of muscle breakdown in the blood.”
By age three, doctors diagnosed Isaac with Pompe Disease. It’s a rare, and life-threatening disease that breaks down his muscles over time. It can cause breathing problems and muscle weakness.
“Went to a wedding that fall, I’m not a crier, but I just wept watching my son cut a rug, because all I could think of is this could be the last time,” Haberman said.
The Habermans found an antidote that gave their caped crusader his power back first time in a long time. Every other week, Isaac goes to Sanford to get enzyme infusions to slow down the disease, and keep his muscles strong.
“It gives us a sense of hope we didn’t have before. That all we saw was decline and here we’re seeing improvement,” Christopher said.
Isaac will have these treatments for the rest of his life, or until someone finds a cure.
“He may already not be walking as well or even heading toward a wheelchair and that sort of thing, which we may still up in and that’s fine,” Margaret said.
Christopher credits the Muscular Dystrophy Association in South Dakota for raising money to fight diseases like this, but also for supporting his family.
“We are huge beneficiaries of people who have come before us and done that research. That tens of millions of dollars were spent researching a treatment for Pompe Disease. Because of their hard work, our son has a good life,” Christopher said.
Unlike LEGOS, life doesn’t come with instructions that tell you what to do when your child gets sick. Through it all, Isaac isn’t letting his disease tear him down, and defeat him.
“Isaac means laughter and it’s the perfect name for him. He’s just a happy happy kid,” Christopher said.
No offense to the Flash and Batman; but Isaac Haberman doesn’t need a cape or mask to show us real super strength.
“He’s so brave,” Christopher said. “He’s a hero in my book.”
Tickets are still available for the MDA Toast to Life Gala.