Normally, reaching a fiftieth birthday, while certainly a milestone, isn’t worthy of the kind of celebration you get by making 80 or 90 years. However, in the case of Robin Hewitt of Batavia, IL, who has Duchenne muscular dystrophy, it’s practically a miracle.
Robin has lived with Duchenne muscular dystrophy, a progressively degenerative genetic disorder that weakens muscles and generally results in a life expectancy that doesn’t exceed one’s mid-20s. To far exceed that life expectancy is so rare, it’s considered something of a medical miracle.
Dan Sladek, the former district director of the Aurora Muscular Dystrophy Association, was so impressed with the feat that he sent press releases to ten different Chicago news outlets to announce the birthday. Of Robin, Sladek says, “Robin is amazing. I don’t know anyone who has such a will to live.”
Sladek is not exaggerating, either. After fighting through the emotional battle of watching his older brother Jeff lose his battle with DMD, Robin actually died briefly during a hospital visit, and came back. He says, “My brother and I did everything together. It was really tough when he died.”
Duchenne muscular dystrophy is the most severe type of this condition (A in graphic above). Not only did he fight to come back from coding at the hospital, Robin wrote letters to his insurance company and to government representatives to fight the cancellation of his insurance, which he did eventually see reinstated.
While he requires 24-hour nursing care, Robin lives in his own apartment and still enjoys the ability to live independently. He can even go to movies, travel along a local river walk, and go grocery shopping, thanks to the benefits of a portable ventilator. For six years, until the economic recession, he handled appointments, accounting, and bookkeeping for a lawn care business that he ran with a good friend.
Indeed, Robin credits his friends with his will to continue the fight. “After my brother died,” he says, “Dan Sladek came to me and said that he was here to help me get through it, to help me go on living.” He describes his days as “pretty full,” and says, “I enjoy the time I get to spend with my friends.” Although Sladek currently lives in Florida, Hewitt says that Sladek, “has been like a brother to me,” and goes on to say, “I know he’ll always be there for me.”
When twenty-five of his close friends threw him a surprise party to celebrate his 50th birthday party, Robin, who considers himself an observant type but was still caught completely off-guard, was overwhelmed. “I looked around and thought, ‘who are all these people?’ Then I realized they were all people I knew,” he says.
In his youth, Robin participated in the annual Labor Day MDA telethon. Of the research funds raised, he says, “I am amazed at the advances that have been made during my lifetime. Hopefully, someday, they’ll find a cure.”
We wish you a Happy Birthday, too, Robin, and many more! If you’d like to send birthday wishes to Robin, leave us a comment, and we’ll make sure he gets them!
Originally published in the Daily Herald
Image Sources:
dailyherald.com
patient.co.uk
triblocal.com
warstore.co.uk
