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The Buddy Walk: Celebrating the differences ... and what we have in common

Tue, Sep 1st 2015 01:50 pm
Buddy Walk with the Family & Friends Down Syndrome Association of Niagara
Buddy Walk with the Family & Friends Down Syndrome Association of Niagara

Editor's Note: The 58th annual Niagara County Peach Festival will open Friday, Sept. 11, at Academy Park in the Village of Lewiston. A major happening is the annual Peach Festival parade, taking place at 11 a.m. Saturday, Sept. 12, along Center Street. Tribune Editor Jill Keppeler offers a personal perspective on her family's participation at past Buddy Walk of Buffalo Niagara parades. The organization is one of the many participating in this year's Peach Festival parade.

By Jill Keppeler

Tribune Editor

I look back at the photos from 2007, and I see a small boy who is just about swimming in his lime-green Buddy Walk T-shirt.

He rides in a stroller, and he's still little enough to comfortably be held and rest his head against his father's chest. He's not quite 3 at the time, and he's pretty tiny for his age.

If you know what to look for, he unquestionably has Down syndrome. I've long since stopped seeing it.

Over the years, the photos change.

That little boy graduates from the stroller to a wagon, then, stubbornly, to his own two feet - walking hand in hand with me, with his father, with his grandparents.

A bald, then blond, baby appears in 2008 and grows progressively bigger - from cradled in arms one year, to toddling the next, to strolling along next to his big brother, an arm slung protectively around his shoulders.

The first little boy also gets taller. His shoulders broaden. (That first T-shirt doesn't fit anymore.) The impish grin stays the same.

The Lewiston Kiwanis Peach Festival parade Sept. 12 will mark my family's eighth Buddy Walk with the Family & Friends Down Syndrome Association of Niagara. (We missed one in 2012.) It's a tradition now, and for my family, it's all in honor, and in support, of my older son, James Keppeler. (I'm the only one who calls him that. He calls himself Jimmy or, increasingly, Jim.)

Jill Keppeler is shown with her then-2-year-old son, James, at the 2007 Buddy Walk at the Lewiston Kiwanis Peach Festival parade. This year's Buddy Walk will take place Sept. 12 at the parade. 

Jill Keppeler is shown with her then-2-year-old son, James, at the 2007 Buddy Walk at the Lewiston Kiwanis Peach Festival parade. This year's Buddy Walk will take place Sept. 12 at the parade.

I work in words, but it can be difficult to put into words what the Buddy Walk means to us. But I'll try.

Last week, my family spent a weekend at an amusement park. (Not in Western New York, but not far away.) We had a wonderful time. But I noticed something I've only occasionally noticed in the past -- a number of children who simply stared, wide-eyed, at Jim like they'd never seen anything like him before.

We weren't offended. We weren't even surprised. Kids will notice kids who are different. I couldn't talk to each of those unknown children about it, but I wish I could. "Yes, he's different. We all are."

The Buddy Walk is a way to say, "Here we are. We're just like you, really. We like many of the same things - and we love a parade. Our families are just like yours."

Jim loves parades and music and books and amusement parks and swimming. He is a master at baiting his little brother. He adores his grandparents. He can't wait to get back to school.

He's a kid. He's not so different from any other kid.

Christine Sirianni, organizer of the Buddy Walk and mother of a daughter who has Down syndrome, said the walk is "a great awareness event."

"It's a great way for families to meet other families," she said. "It's a great way for the kids to meet other kids.

"It really is a celebration. That's how it is. It's a celebration of our kids."

So ... I've written it before, and I'll write it again. If you see us Sept. 12, walking along Lewiston's Center Street in our green T-shirts, waving and throwing candy ... please wave back. Give us a cheer. We'll cheer back. (And my younger son will throw you some candy. He loves throwing candy.)

We love our kids. We love their differences. Help us celebrate them.

Registration for the Buddy Walk of Buffalo Niagara will take place from 9 to 10:30 a.m. Sept. 12; all participants must register to walk. (The parade starts at 11 a.m.) The fee of $15 includes a T-shirt, lunch and ride tickets for the Peach Festival for those age 21 and younger.

For more information, visit www.dsaniagara.org.

•••

The Family & Friends Down Syndrome Association of Niagara Inc. is about more than the Buddy Walk. The group works with local hospitals and physician offices to educate new and expectant parents, provides up-to-date information and offers professional referrals, as well as parent-to-parent visitation. It also provides educational seminars for families and professionals. (The Lewiston Public Library houses many resources on Down syndrome, including books, DVDs and CDs.)

Sirianni said one great success was assisting a mother who fled Africa with her 2-year-old son, to try to give him a better life. The association helped provide them with housing, furniture and schooling for the little boy.

"She's still here. Her son's in schooling. That was a very difficult task," she said. "That was a wonderful, wonderful experience. A little bit at a time. It only takes one to keep us moving forward."

A relatively new facet to the association is the Miles of Care initiative.

About 40 to 60 percent of babies with Down syndrome (including my Jim) are born with heart problems requiring some form of surgical correction. Due to a critical shortage of Buffalo hospitals and facilities offering pediatric angiography and/or heart surgery, Sirianni said, families must often travel to Philadelphia or Boston if treatment is not possible at Strong Memorial in Rochester.

The Miles of Care initiative aims to help families who struggle with the travel expenses they incur to accompany their child. Financial assistance is limited to emergency medical intervention or surgery.

Sirianni recalled receiving a call from one young mother who could not afford even a bus trip back and forth to Buffalo to see her dying child.

"We have these parents who need to see their kids," she said. "... We have financially helped families in the past and we want to get back on board with that. We're still a skeleton crew and a shoestring budget. But we can do it."

For more information on the initiative or the association, call Sirianni at 716-870-4904.

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