Families share how Normal Moments helped them cope with child's illness

Each weekend thousands of people take to the streets of our communities, walking and running to raise money for charities. Every one of them has found a cause to believe in, a bit of hope through helping. And every one of them has a reason for being there.

Today, two mothers try to describe the indescribable - guiding their families through daily life while coping with their children's life-threatening illnesses.

Lindsay Olech Perez learned while pregnant with twins that one daughter, Elena, would have a serious birth defect. The reality was much more profound than she - or doctors - imagined.

Nora Przanowski's son, Jack, who has Down syndrome, has fought his way through treatments for two forms of leukemia.

Both say they're grateful for help from Normal Moments volunteers. Members of the Naperville-based group have stepped in to handle some of the everyday chores, freeing up the women to focus on their families and spend a few "normal moments" with their children. Both will participate Saturday, Sept. 19, in the second annual Little Things in Life walk to raise money so Normal Moments can help other families like theirs.

Lindsay Olech Perez of Cary

Fifteen months ago, my identical twin girls, Vanessa and Elena, made their entrance into this world seven weeks ahead of schedule.

Throughout my pregnancy, we were aware Elena had a heart condition, but the only information the doctors could give us was that her heart was on the right, which is the wrong side of her body. A few weeks later, her amniotic fluid rose to dangerously high levels, indicating some sort of an obstruction.

After their birth, doctors discovered that Elena wasn't so much suffering from a heart condition, but rather a lung condition. Her right lung had never formed, causing her heart to shift over.

In addition, her esophagus was not connected to her stomach. The upper esophagus abruptly ended in a pouch, and the lower end connected into her trachea. Her intestines were not connected to her stomach either, and she had a mal-rotated bowel. Her airway was 80 percent collapsed, eventually requiring a tracheotomy.

When my 3-pound, 11-ounce baby was merely a day old, she was taken to surgery, where she underwent three different operations. A g-tube was placed, allowing her to eventually "eat" breast milk, and they connected her intestines to her stomach. Unfortunately, the surgeon was unable to repair the esophagus because the distance between the two ends was so great. She arrested twice the following day. Then I was told my baby was hemorrhaging in her brain.

In addition to all of Elena's congenital anomalies, she suffered many life-threatening medical errors. Elena's arm was fractured when she was 2 weeks old. Her ex-surgeon broke her rib during the second failed attempt at repairing her esophagus. Our baby coded due to one nurse's incompetence and was resuscitated in front of us, (one of many times).

Another nurse overdosed her on Methadone, used to wean her from the necessary seven weeks of narcotic drips. She has survived sepsis and several bouts of pneumonia.

During her first year of life, Elena logged 11 trips to the operating room, four of which were major surgeries. She spent seven and a half months in two separate neonatal intensive care units, unable to see her twin or her older sister, Evie. She finally came home for six days, only to return to the hospital three more times.

I traveled between 60 and 180 miles a day going back and forth to the hospital, sometimes several times a day. I was forced daily to choose who needed me the most, Elena, Vanessa or Evie?

Once Elena finally stopped coding daily, I attempted to return to my job of nearly six years, only to be told (via e-mail) that there were no open positions.

It has been a struggle to maintain any sense of normalcy in our lives, but we have had many people reach out and lift us back up during the most challenging of times.

On Sept. 16, 2008, a specialist did a bronchoscopy on Elena. He sat me down and told me she was a candidate for a trach, however, he did not think she would survive the operation. His operative report stated that her airway may not be salvageable and it may not be compatible with life.

I called my husband to tell him the doctor's findings. Although my words were barely audible, a hospital worker overheard me and took the opportunity to tell me about an organization called Normal Moments.

After losing her daughter, Melissa, to cancer, founder Patricia "Tricia" Fragen has made it her lifelong goal to help families of critically ill children.

That very same day she responded to our request for help. Within a week, they had arranged for meals to be delivered to our house, for Randy's Lawn Service to maintain our yard and for Cleaning Ladies 911 to clean our home.

Suddenly, I was able to focus even more on my family. During my limited time at home, I no longer worried about household chores. One of their volunteers helped organize a very successful benefit for our family that had close to 300 people in attendance.

Even though Elena is safely at home with us for now (she is awaiting another risky, major surgery where part of her colon will be removed and used as an "esophagus"), we continue to receive help from Normal Moments volunteers. Tricia regularly sends us words of encouragement and has made herself available 24 hours a day, not only to our family, but to all of the Normal Moments families.

Elena has been my biggest inspiration. She is the driving force behind everything I do.

Our child fought for her life before she even knew what she was fighting for. We are truly blessed to be her parents!

Throughout our many hospitalizations, I was completely shocked at the number of sick children that are out there. I can only hope their families have found the support they need to help them make it through the day.

Although Elena will not be able to attend the second annual Little Things in Life fundraising walk Sept. 19 in McHenry, I will be walking in her honor. Please consider making a donation to help Tricia continue to realize her daughter's dream of helping families with critically ill children such as Elena.

Monetary donations are not the only way you can help. Do you own a business? Consider donating a service or a product to a family in need. Thank you, and I hope to see you at the walk!

Nora Przanowski, Spring Grove

We will walk again this year to raise funds for an organization named Normal Moments. The organization is very near and dear to my heart because they came in to help me and my family at a very difficult time.

My son, Jack Przanowski, is now 7 years old. He has Down syndrome, which put him at a higher risk to develop leukemia. Just before his second birthday, we found out he had acute myelogenous leukemia. After a long year of treatment and all that goes with it, he did beat it.

Unfortunately, at age 4, he was diagnosed with acute lymphocytic leukemia. This leukemia is not as intense in treatment, but the treatment lasts for three years. This has meant monthly, and sometimes bi-weekly, trips to Lutheran General Hospital in Park Ridge - we live in Spring Grove near the Wisconsin border.

His immune system is compromised, so we all had to become very vigilant about keeping the house clean and hand-washing to minimize spreading germs.

Even though we did all that, he still seemed to get every little cold that came along. My life became nothing but traveling back and forth to the hospital, caring for Jack when he was sick and still trying to find time for my older daughter, who would struggle with all the attention spent on her little brother.

There seemed to be no time for vacations or simple weekends of going to the park or movies or whatever. There never seemed to be time for anything but trying to keep Jack comfortable and making sure we were doing all we could to beat this cancer.

When we were at the hospital one week, the Child Life Specialist told us about an organization named Normal Moments that helps families struggling with life-threatening diseases. They offer all kinds of services - landscaping, home repair, cleaning, helping with pet care, massages, etc.

For my family, the toughest task had become just keeping up with the everyday duties and chores that come with a "normal household."

I called Normal Moments founder Patricia Fragen and she introduced me to a wonderful organization named Cleaning 911. They have helped me clean my house and they give me some time to take care of all the other responsibilities I have had going on over the past few years. It was a godsend. I just couldn't keep up with the simple things, much less dedicate time to getting the house really clean.

Normal Moments also arranged to have a masseuse come to my house and give me a massage on a week that was extra stressful. I had no idea a group like this existed and think it is just such a great thing to have someone come in and lend a helping hand, even if it's just for the simplest of tasks.

Cleaning 911 hosted the first Little Things in Life walk last year to help Patricia raise money for Normal Moments to help more families like my own. I hope to encourage more folks to participate in the walk this year because they are such a great group and hosted such a great party afterward.

If everyone knew how much this walk helps families struggling with the day-to-day stresses, they could feel the joy I have felt, not only by giving to help others struggling, but also because I was lucky enough to have them come and rescue my family on several occasions.

<p class="factboxheadblack">Little Things in Life walk</p> <p class="News"><b>Why:</b> To benefit Normal Moments, a cadre of volunteers who donate services and do chores for families with profoundly ill children to allow parents to focus on their families</p> <p class="News"><b>When:</b> Check-in at 9 a.m. Sept. 19; walk begins at 10 a.m.; lunch at 12:30 p.m.</p> <p class="News"><b>Where:</b> McHenry VFW, 3002 W. Route 120, McHenry</p> <p class="News"><b>Details: </b>Walk routes of 4.9 miles and 7 miles are available with vehicle support</p> <p class="News"><b>Cost:</b> $20 to register, pledges of $100 or more encouraged; register by Sept. 3</p> <p class="News"><b>Info:</b> <a href="http://normalmoments.org" target="new">normalmoments.org</a></p>