[JHeath]

Many of you have noticed the banner I've used as my signature lately. I noticed this article in the SB Tribune, and thought I'd repost it here to give you more background on what the money I've raised (along with the others involed) will be used for and who it will go to. Thanks, again, for your supprt!

Article published Sep 15, 2008
‘An unbelievable heart’
Walk raises awareness of Down syndrome
By JIM MEENAN Tribune Staff Writer
Kathy Ratkiewicz remembers the birth of her boy, Danny, 10 years ago.

“When I found out Danny had Down syndrome at first I felt powerless,” said the South Bend resident. “I was really, really depressed.”

And she and her husband, John, parents of seven children, struggled to find a place to turn for help.

Starr Kelly remembers, too, when she and her husband, Rob, found out that their daughter Keelin was a child with Down syndrome shortly after her birth.

“The first 48 hours were a period of shock and trying to get as much information as we possibly could,” Starr said. “There was so much we didn’t know.”

Now both families are a part of a much larger group reaching out to help others in their shoes.

Ratkiewicz is vice president of the Down Syndrome Family Support and Advocacy Group, Michiana. Starr Kelly, of Mishawaka, is a board member.

Both are taking part in the seventh annual Michiana Buddy Walk Saturday, which begins at the Stepan Center on the north side of the University of Notre Dame campus.

The walk’s goal is to raise awareness of Down syndrome and the support group, and to raise money.

The money goes to such things as the $200 grants the organization gives to members for everything from bike training wheels to hospital stays relating to their child.

That includes grants to parents for their child’s involvement with Reins of Life, Kindermusik, The Children’s Dispensary, Camp Millhouse and The Foundation for Music and Healing.

The Buddy Walk also raises money to cover the cost of bags given to parents upon the birth of their child with Down syndrome. The bags contain books about Down syndrome, information on state laws and gifts for the baby.

But raising awareness is just as important to members of the Michiana Down syndrome group, as it often calls itself.

They are fighting the fact that many parents nationwide (some Web sites quote the number at 90 percent) opt to abort the pregnancy after prenatal screening and diagnostic tests indicate their unborn child likely has Down syndrome.

Parents are warned the child will drain their finances, tear their family apart and never be able to live apart from his or her parents, Ratkiewicz said.

“There is so much evidence to the contrary,” Ratkiewicz said.

Based on their own life experience with their children, they feel there is no need for an abortion to happen.

“Now it amazes me that I had negative feelings because he is a really great kid,” Ratkiewicz said. “It is nothing like I thought it would be. He is a funny kid, he is the heart of our family.”

Rob Kelly, Starr’s husband, thinks the imagination takes over and people think things will be far more difficult with a child with Down syndrome.

“At the time of the birth, you are getting so far ahead of yourself,” he said. “You are thinking about what their life will be like when they are 40.”

And reality has been far kinder, he indicated.

“Day to day, it certainly has been wonderful,” he said. “It certainly has been a lot less impactful in my day to day life than I thought it would be.”

Kelly Marko, of South Bend, has also found raising a child with Down syndrome to be rewarding.

“The rewards and joys so far outweigh anything you have to go through,” said Marko, South Bend, whose son Alex, 9, has Down syndrome. “It’s a wonderful ride.

“He is so enriching to the family. He has given things to me that made me a better person. Other children of mine have benefited greatly from this.”

Raising a child with Down syndrome has its challenges, she added, but those are made easier by the local Down syndrome group.

“I don’t know how I would have made it through some of the struggles that go along with the disability without the support of this group,” Marko said.

A child with Down syndrome often has muscle tone issues early on, which lead to delays in speech, Marko said.

“But once they are addressed, they really develop at an astonishing rate,” Marko said.

Many children with Down syndrome have heart defects which require surgery. Vision and hearing problems are also common.

“Medically they are fragile at the beginning,” Marko said. “But there’s an unbelievable heart in this kid that just wants to come out and just wants a chance.”

And groups like the Michiana Down syndrome group help give that chance.

“Not only do they provide support in areas in how best to navigate the education system and how best to find medical help that fits with what you need, but they are a great support for social resources, such as mom’s night out,” Marko said.

The organization also has a library at Logan Center, where informative books on Down syndrome are purchased with the funds from the Buddy Walk, as are books for the children.

Life really does go on, the Kellys stressed.

“If anything, life is better,” Starr said. “Anybody who spends any time with our child feels like they have been touched in a special way.”


If you go

The Michiana Buddy Walk, organized by the Down Syndrome Family Support and Advocacy Group (DSFSAG), will take place Saturday at the Stepan Center, University of Notre Dame. Registration is from
10 to 11:30 a.m. with the walk starting at noon.
Everyone with a $50 donation will get a free T-shirt (while supplies last). This year’s event will have a lot of fun, food, entertainment after the half-hour walk, plus information booths, door prizes, a silent auction and more.
Donations are also accepted online at www.michianadownsyndrome.org. For more information, call the DSFSAG at (574) 235-3758.


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Staff writer Jim Meenan: jmeenan@sbtinfo.com (574) 235-6342

[JHeath]

Just a quick update on our fundraising effort for Down Syndrome Family Support and Advocacy Group.

Through your generosity, we have exceeded our fundraising goal of $1500.00, for the Michiana Down Syndrome Family Support and Advocacy Group (DSFAG). Thank you all for your support!