Fundraiser for Hanewacker family
March 16, 2011 - In October, when Derek Hanewacker was just 10-months-old, he was diagnosed with Hurler Syndrome, a rare genetic disease. Since then, he has endured almost weekly infusions of crucial enzymes and last month, he had a bone marrow transplant.
|Derek Hanewacker with his father, Scott Hanewaker. Photo provided. (click for larger version)|
Luckily, says his mother, Holly Hanewacker, Derek is "the best baby ever."
Also lucky for the Hanewacker family, which includes Derek's father, Scott, they have medical insurance. Still, deductibles and co-pays have been costly, as well as travel expenses. Derek's transplant took place at the University of Minnesota Amplatz Children's Hospital, and he and his mother must remain in Minnesota, staying at a Ronald McDonald carehouse, until May.
A fundraiser benefit for the Hanewackers, Brandon Township residents, is planned for 6 p.m.-midnight, March 26, at the American Legion, 4819 Mary Sue St., Clarkston.
Holly said her son had been congested since he was born and she and Scott noticed muscle weakness in Derek, as well as a bump on his lower back, which turned out to be a misshaped bone in his spine. A University of Michigan genetic specialist put the pieces together and diagnosed Derek with Hurler Syndrome, in which the body lacks an enzyme to break down extra sugars and molecules, causing them to accumulate on organs and tissues, causing damage over time.
Derek had an evaluation in Minnesota in November and then for the next two months had weekly enzyme infusions at the University of Michigan, before traveling back to Minnesota for more infusions, chemotherapy and ultimately, on Feb. 11, the bone marrow transplant.
"Someone saved their baby's cord blood, rich in stem cells, so his transplant came from umbilical blood," said Holly. "He needs eight more infusions, then they test his blood to make sure his body is producing the enzyme and enough of it. It won't cure him, but it will greatly improve his quality of life, and greatly extend his life."
The transplant means no further damage will be done from the disease that strikes roughly 1 in 100,000 people. Without treatment, Derek would not have been expected to live past the age of 10.
Derek has some bone and joint abnormalities and will be slightly shorter than his peers. His gross motor skills are delayed, but he is otherwise developmentally fine.
"He's not walking or crawling yet, but physical therapy is helping him with that," said Holly. "His structure makes it more difficult for him. He is strong, he just needs a little help."
Derek loves to be read to, especially Dr. Seuss books including "Hop on Pop." He also loves toys that make noise and playing ball.
Holly is grateful for all the support, particularly Dr. Linda Loewenstein, for getting Derek an early appointment at U of M, and to her sister and friend who have planned the dinner fundraiser event.
For more information or to purchase advance tickets for $12, call Allison Miller at 248-660-4833. Tickets at the door can be purchased for $15 per person.
Susan covers Brandon Township and Ortonville