One out of every 3,000 births a child is born with a genetic disorder known as Neurofibromatosis (NF).
“It’s a genetic disorder of the nervous system,? said 13 year-old MacGregor Schaffer, who has NF, the only sign of which are brown spots on his arms and body known as ‘Cafeaulait spots.?
‘Surprisingly not many kids have asked me what the brown spots on my arm mean,? he said. ‘If no one asks, I’m not going to tell them.?
His mom, Wendy Schaffer, said when he was little he referred to them as his ‘special spots.?
‘Everybody’s trying to encourage me to tell them they’re birthmarks, but they’re not birthmarks,? MacGregor said. ‘When I tell them they’re Cafeaulet spots they think they’re specific kind of birthmarks.?
Wendy said MacGregor has a ‘very mild show of the disorder,? and they feel fortunate that he hasn’t been more affected by it.
‘The main problem is tumors can grow at the ends of the nerves and they can show up just as flesh colored bumps on the outside of the skin, but they can also grow internally, inside the brain, inside organs and even grow on the nerve of the eye,? she said. ‘We’ve known a lot of people and a lot of kids who’ve already had surgeries.?
MacGregor sees an eye and genetic specialist yearly, which he thinks is fun because he gets to miss school and see his older brother Cole at the University of Michigan, where he is studying to go into medicine, perhaps genetic testing.
Every year, MacGregor also attends a golf outing at the Great Oaks Country Club in Rochester Hills to help raise money for NF.
‘There are a bunch of different auctions, kids get their own room and play the Wii, play tennis, putting green and we have a big banquet,? he said. ‘It’s kind of a fun thing for the kids.?
Kevin Harrison, owner of KH Home in Clarkston, also held a fund raiser for NF on April 14 by hosting a CAbi clothing fashion show at his store. Pam Ford Morgan and Mary Warner also helped.
Wendy said the three have been ‘great about bringing attention to lots of different causes.?
‘This is definitely something Pam wants to do again and I think each time she will probably have a recipient of the donations that were made for those kinds of nights, I was really honored she would highlight NF and bring awareness to it,? Wendy said.
‘I appreciate that kind of support locally. I think Clarkston is great for jumping on lots of different causes like SCAMP and Relay for Life.?
Another condition with NF sometimes is learning disabilities, added Wendy.
‘MacGregor has in the past, but he’s done phenomenally well in school, weaning himself off the LRC (Learning Resource Center), where he’d been getting some of his help with some of his schooling,? she said.
MacGregor said he mostly has trouble in math.
‘The way the brain processes information, it seems it’s a very consistent thing with this condition and math is very challenging,? Wendy said.
MacGregor’s favorite subject in school is ‘Apply Tech,? which consists of using computers and doing experiments.
‘Right now we’re bungee jumping Barbie (dolls). We’re trying to figure out in centimeters how long the rope would have to be so it wouldn’t touch the ground,? he said. ‘We’ve also made hovercrafts, and straw rockets.?
When not in school he enjoys going to the movies, hanging out with friends, playing video games, making movies on his computer, and his latest computer gadget, his iPad.
‘I really love computers and technology,? he said.
MacGregor also loves sports. He started playing ice hockey at 6-years old and is playing his first year of lacrosse at Sashabaw Middle School. Besides his older brother Cole, he has an older sister Maddie, two dogs, Daisy and Mowgli and a cat, Oreo.
As far as NF goes, MacGregor said the condition has taught him to be more compassionate towards others who have various conditions such as ADD or autism.
‘It’s important to be sensitive to others,? he said. ‘You never know if they have something that makes them act a certain way.?