Someone You Should Know: The Face of Hope For Rare Diseases
SIOUX FALLS, SD – A young family in Sioux Falls is fighting for those with incurable, often untreatable diseases. Their motivation centers around their son, who’s in a battle of his own. He’s proof that a diagnosis doesn’t have to define you.
Isaac Haberman loves Legos and all things “boy.” His older sister, Jordan, is happy to play with him. His parents are thankful he’s alive.
“We knew there was something serious probably happening with his body and his muscles, but we weren’t able to figure out at that very moment what it was,” says Isaac’s mom, Meg.
At two years old, Isaac started showing signs of physical disabilities. By age three, he got a life-changing diagnosis.
“He has this disease called Pompe disease, which I didn’t know anything about,” Meg explains.
Many people haven’t heard of it. Pompe is a rare, life-threatening disease that breaks down muscles over time. It’s why Isaac sometimes walks on his toes, to make up for weakness in his upper legs. The 4-year-old gets treatment every two weeks, six hours at a time. The goal is to delay, if not stop, the progression of the disease. He will do this for the rest of his life. But, upon meeting him, seeing his smile and hearing his laugh, you’d never know it’s a hardship.
“He’s a champ. He’s an amazing kid, he’s resilient. What four-year-old is doing it with a smile on his face? That’s Isaac,” says his dad, Christopher.
Despite Isaac’s positive attitude, he is going through so much. But, he’s also the face of hope for so many.
“When people see him, when we go to restaurants and gas stations and grocery stores that help raise money for the MDA, and they see this little guy who’s benefitting from all that fundraising, I think that really helps and motivates people,” Christopher explains.
Pompe and other muscle disease patients get a lot of support in many different ways from the Muscular Dystrophy Association. Isaac is returning the favor. About a year after the Habermans got involved with the MDA, the association came to them with a very special request: to make Isaac the youngest ambassador the South Dakota chapter has ever had. His family has made it their mission to raise money and awareness for disease research and programs. They say they’re doing this for other people, many of whom don’t have the physical abilities Isaac has, or, also unlike Isaac, they have muscle diseases that don’t have treatment.
“You’re not defined by your disability. You can have wholeness and health and friendships and a career and do a lot of amazing things no matter what disability you have,” Christopher says.
But, their efforts could also help Isaac. So much of his future is unknown. More funding could mean finding new answers, or a better treatment to keep their sweet, happy boy smiling from ear to ear.
You can help by donating online to Team Isaac and going to the MDA Muscle Walk in Sioux Falls this weekend. The money pays for things like research, care centers and a special summer camp. The Muscle Walk is Saturday at 9 a.m. at Cherry Rock Park.