by Madelyn Fogarty

Madelynfogarty@yahoo.com

As balloons danced in the sunny sky above South Wilmington on July 9, three year old Maddie Grace Simms watched them head north and was certain these balloons would make their way past Children’s Memo-rial Hospital in Chicago so her brother, Evan, could see them, too. The balloon launch, preceded by a prayer, was the start of A Day in the Park for Evan Simms.

“This was a very touching and tearful moment for me and will be one that is never forgotten,” Anne Simms wrote in her journal entry the following day.  “For as I watched all of those balloons sent into the sky I knew it was more than helium that was carrying those balloons; attached to those strings were the hopes and prayers of all of the angels there pulling for little Ev ~ all Evan's Angels.”

For Evan Simms, the 17-month old son of David and Anne (Wollgast) Simms of South Wilmington, life has not been easy. Born prematurely at just 30 weeks, Evan was diagnosed with multi-cystic kidney disorder which causes an inability of his kidneys to clean toxins from his system. He has been on dialysis since he was two weeks old.

When he came home after 21/2 months at Loyola University Hospital, the Simms were taught how to care for Evan and administer dialysis at home – a process that has taken place for no less than ten hours each day. Many challenges faced the family in the months ahead as they learned more than they ever wanted to know about hospitals, kidney disease, dialysis, infections and transplants.  But, they moved forward in faith, doing what they needed to do and always hopeful for what tomorrow would bring.

“They told us praying was all we could do for a baby that couldn't heal itself,” Anne recalled in her journal as Evan celebrated his first birthday and she remembered back to those first few days when Evan was born.

With all he has been through, Evan is a little behind with his motor skill development, but all in

all, he is just a good-natured

little boy who loves Mickey Mouse and likes to

irritate his big sister, just

like any brother.

“He is so bubbly

and fun,” says Anne. “He constantly has a smile

on his face.”

In May of this year, Anne was found to be a good kidney donor match and the family looked forward to a life for Evan that might give him freedom from cords and tubes.

“Today feels like that first day of spring when you can finally get out the shorts, take off your jacket, and roll the windows down,” journaled Anne after receiving the news. “Like that feeling when you can't stop smiling because the world is suddenly so much brighter and better.  That is the feeling I have today x 100!”

“It felt like a weight had been lifted off my shoulders,” Anne told The Paper.

With the planned July 18 transplant just weeks away, the family was forced to put their dream for Evan’s new kidney on hold and tackle another serious problem. Following stomach pains that sent Evan to the emergency room, a cancerous growth was found on Evan’s liver – a frightening and disappointing set back. Surgery has now removed the low grade cancer and the prognosis is good.

“As liver cancer in kids goes, he definitely got the good kind,” Anne told The Paper indicating that no long term compilations from the cancer are expected.

Evan is now recovering from the liver surgery but changes with his dialysis will require him to make a trip to the Davita Dialysis Center in Chicago three or four times a week to receive the life saving procedure until the new kidney can take over.

“We are hopeful the transplant will happen before 2012, but we just don’t know,” Anne told The Paper.

There are some additional complications that will require a team of doctors to be on hand when the transplant does occur, so lots of coordination is involved just to get the procedure scheduled. And, even if all goes well with the transplant and Evan’s body accepts his mother’s kidney, there are still many challenges ahead.

“A kidney transplant is considered a treatment, not a cure,” explained Anne. “Your kidney has your life expectancy, so if he has my kidney, it [the kidney] has my life expectancy”.

So, at some point - or points - in time, Evan will likely return to dialysis while he waits for another transplant.  Also, if his body does accept his mother’s kidney, to ensure it will continue to allow the foreign organ, there needs to be extreme diligence throughout his lifetime with taking medication to ward off rejection of the kidney.

“The medication needs to be taken every 12 hours,” explained Anne pointing out there is no margin for error. “Even being a few minutes late could mean his body would start to attack the kidney.”

While little Evan’s medical journey is a remarkable and heart-tugging story, another part of this story is equally touching – it is a story of faith, hope, family, friends and community.

“We have been so very, very blessed,” said Anne.

In April of 2010, Evan’s Angels were born when Anne organized a team of family and friends who participated in a Chicago walk raising $5,000 for kidney research. Over the last year, Evan’s Angels have helped to lift the family during difficult moments and have provided much needed support for the Simms family.

At the most recent Day in The Park for Evan, hundreds of people came out in the small, close knit community - affectionately called Swilly by some of the locals - to support the Simms.  Starting with A Walk to Remember, 135 people joined in a mile long walk in honor of Evan.  Volunteers donated raffle items, ran a bingo tent, gave carriage rides, served food, made root beer floats, purchased bracelets, and offered their talents for things such as magic shows, hair dressing, pictures, music, a movie and more. “Angels” Ruth Lardi, Beth Bomba and Cindy Alderson were in charge of the event.

“It was phenomenal,” Anne told The Paper.

And phenomenal it was – in just a few hours, this town of less than 700 people raised approximately $22,000 for Evan.

“Our community is a family – we take care of each other,” one participant told The Paper.

This support has been just what is needed to get them through the most difficult moments.

“It is like a blanket that surrounds and protects [Evan] and that is done by all of you, his family and friends,” writes Anne.

And so, the Simms family looks forward to each new day, feeling blessed and hopeful for the future knowing that angels, in heaven and on earth, are watching over them.

“You can struggle with it and be down in the dumps,” reasoned Anne. “Or, you can have a positive attitude.”

David and Anne extend their thanks to everyone for everything from kind words, visits and hugs, to small notes of encouragement to bake sales and prayers.

“I hope everyone feels as loved as we feel every day,” said Anne.

To follow Evan’s journey, you are invited to visit his CaringBridge page at http://www.caringbridge.org/visit/evansimms