Ruth Kramer ’18, News Editor
For many teenagers it is hard to imagine life with a disabled brother or sister. It is hard to understand that people stare at you when you go out in public because of your sibling. It is hard to think that your sibling and you couldn’t get into stupid fights because your sibling can’t even talk. It is a life hard to imagine, but it is a life that millions of kids live with (and still enjoy) every single day.
One of these teenagers is Cincinnati Country Day senior, Nathan Grant. Grant’s twin brother, Nik, has a genetic disorder called Mucopolysaccharidosis (or MPS). There are seven different types of MPS which can all result in stunted growth, shortened life span, inability to verbally communicate, and other developmental delays. But as Grant says, “that makes them no less of a person.” Just because someone has a disability, it doesn’t mean they can’t have fun or enjoy a movie or have a favorite restaurant. “Patience and compassion comes with time,” said Grant. As Grant began to understand his brother and realize that life was not perfect, he decided to go out in the world and do something for not only disabled kids, but their siblings as well.
When Grant was in Orlando for an MPS conference, he met a lot of siblings from around the country and got to hear their stories about having a sibling with MPS. At that time, Grant decided to write a book for MPS siblings about MPS siblings. So, in December of 2014, he got to work. And almost a year after he began, his book The MPS Sibling: Short Stories for Brothers and Sisters was published. When Grant needed a cover, he looked no further than to his own grandfather. The beautiful illustration on the cover is of Nathan and Nik Grant in front of a tree with a purple ribbon attached to it (the color purple is the ribbon color for MPS). Grant had to do a lot of writing for the book himself, including his own story about having a brother with MPS. Grant says that his favorite part to write about for the book was “explaining MPS because not a lot of people know about it, and telling funny stories about [his] brother.” Grant also said that he enjoyed reading the stories of those affected by MPS. “Originally it was supposed to be just siblings who were writing the stories, but then it changed to where it was parents and siblings and even MPS kids themselves,” says Grant. In the beginning, Grant first looked for a local publisher, but decided against it, as he wanted full control of the stories and proceeds. “I didn’t want to edit too much because that would be like changing the stories of others and that’s not what I wanted to do,” Grant explains. So, Grant decided to publish through Amazon, which would instantly create an eBook option and allow Grant be in full control of the book. This also gave him the ability to donate all of his profits to the MPS Society, a society that supports not only those who have MPS, but their families as well.
But Grant wasn’t done there. After giving an assembly to the Upper School about the importance of respecting those with disabilities (being polite, helping when asked, not staring), he decided to do something that would not just affect the Upper School at Cincinnati Country Day. Grant decided to form a society for siblings of disabled kids called Siblings with a Mission. Siblings with a Mission was launched in May of 2015 and is open to all siblings with a brother or sister who has a disability. The society is divided up into subgroups based on the disability (autism, MPS, down-syndrome, etc.) and is run by teenagers for teenagers. “I realized there weren’t many resources for siblings of disabled kids,” says Grant, “and even when there were, they were run by adults. Siblings with a Mission is run by teens.” Siblings with a Mission is an international organization that spans across the US, Australia, Canada, France, India, Ireland, Israel, Pakistan, Singapore, South Africa, United Arab Emirates, and the United Kingdom. The goal of Siblings with a Mission, as Grant put it “is to first understand that life is not ideal, but it can still be pretty amazing and second, to show communities what to do when they see someone with special needs.”
Nathan and Nik Grant both love to do things together. They like to go swimming together or watch TV. Simply, they live like brothers do. Grant says that “one of the best things about this journey was learning that Nik is not all that different from everyone else. This is all normal for me.” That’s what Grant’s goal is, to show people that just because someone has a sibling with disabilities doesn’t make them any less normal. He says “I just wanted to go out and change that. To tell people to not stare and be mean, but to help them understand that this is normal.”
Sources:
The MPS Sibling: Short Stories for Brothers and Sisters on Amazon-
http://www.amazon.com/The-MPS-Sibling-Stories-Brothers/dp/1517332915
Siblings With a Mission- http://www.siblingswithamission.org/
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