Event to raise hope for curing little-known illness
"Her heart is broken, and lots of special people are trying very hard to fix it," was a mother's explanation to her child about why her playmate needs to wear an oxygen mask to live. However, to an adult what's left unsaid is unsettling and leads to nightmare status.
That nightmare began in March 2006 when 4-year-old Nicole Elsenbroek's parents, Scott and Maria, discovered their daughter had a rare, life-threatening disease called pulmonary hypertension, a little-known blood vessel disorder that causes high blood pressure in the lungs, and for which there is no cure.
Known as Nikki by family and friends, the little one's symptoms crept into the picture as she endured shortness of breath and weakness took hold. She lost her voice, and alarm set in as mom Maria Elsenbroek searched nine months for an answer to what she calls an often-misdiagnosed disease.
"The symptoms are confusing, and the condition is not recognized by many physicians," Elsenbroek said. "We needed to take action for her treatment and luckily we found a specialist in New York, the only one in the U.S.A. for (children's) pulmonary hypertension."
Nikki's condition was so severe that without treatment "she could have had a heart attack and died at anytime," because the internal blood pressure of her heart and lungs was in the 70s while normal pressures for children her age are in the 20s, her mother said.
"Our daughter is taking numerous medications, and she will need to use an oxygen mask for the rest of her life," Maria Elsenbroek said.
A fundraiser with proceeds slated for the Pulmonary Hypertension Association is planned to support efforts to find a cure. The dinner dance with live entertainment will be from 6 to 11 p.m. Feb. 23 in Chandler's Chop House and Grille, 401 N. Roselle Road, Schaumburg.
A sit-down dinner follows a cocktail hour. Victor Pacini, Frankie Miglio, Daniela Tereza and Giana Casale are the featured entertainers.
Who would take on the magnanimous task of running a fundraiser, one that hopes to pull in more than $3,000?
None other than a group of moms who met each other and became close friends when their children were in 3-year-old preschool at St. Hubert Catholic School in Hoffman Estates.
Maria Elsenbroek said the women began to mingle, becoming involved with their children in preschool, and "all of us clicked so well we arrived early just to talk with each other."
Julie Olsen, whose daughter Brooklyn was in Nikki's preschool class, was the mom who tried to offer an explanation (the broken heart example) to her daughter when she chose language suitable for her preschooler. All the children are in kindergarten now.
The moms, with organizers Denise DeGuzman and Daniela Tereza at the helm, fashioned a fundraiser named "A Cure for 'Five Pennies': Daddy's Little Girl," an effort to inform people about the disease and at the same time raise money to help thwart it.
The unusual name for the event evolved from Nikki's dad's word play on her name, Maria Elsenbroek said.
"My husband refers to Nicole as 'five pennies equal Nickel'" Elsenbroek said.
Others in the mom's group are Suzanne Avila, Julie Bosshart, Kim Dobrincu, Katrina Heavener, Kate Johnson, Kristina Knapp and Maria Yonkus.
Organizers obtained more than 16 raffle items, including a $500 painting, as well as restaurant and spa certificates. Raffle tickets are $2 each, or three for $5.
Maria Elsenbroek has great expectations a cure is on the horizon.
"My hope is that this will help bring awareness for everyone who doesn't understand this life-threatening illness, which is very rare," she said.
The deadline is Tuesday to buy the $30 dinner dance tickets. Call Denise DeGuzman at (847) 697-2934. For more information, visit www.firstgiving.com/phassociation.