Benefit raises funds for local child

Posted by the Ocean County Observer on 03/8/07

BY ANGELA SANTORIELLO
                                                                                                                                                                             

STAFF WRITER

BERKELEY — Eleven-year-old Carly Ruhnke has the body of a two-year-old child.
Carly suffers from a rare condition called Morquio syndrome that is caused by an enzyme deficiency. Morquio syndrome is characterized by short stature and skeletal and joint abnormalities.

A Chinese auction for Carly took place at the Bayville Elks on Saturday, which was also Carly's birthday. The event drew nearly 200 people whose bids helped raise $9,000 toward funds for Morquio syndrome research.

"Both my husband and I have a recessive gene, and that is why she has it," said Carly's mother Carol, adding that her daughter was diagnosed with condition when she 18 months old. "They (the doctors) don't paint a pretty picture and many areas of her body are affected by it."

Since her diagnosis, Carly has had 12 major surgeries that at times have caused her to have to be in a body cast from her arms to ankles for six weeks. The only hope Carly has to become pain free is to enroll in a 2008 clinical trial under Dr. Shunji Tomatsu, the chief medical advisor of the St. Louis University School of Medicine's Pediatric Department.

"Of course it is our hope that she will be chosen," said Ruhnke, adding that the clinical trial would create the synthesized enzyme Carly is lacking. "It would help her with her symptoms and ease some of her pain while helping her function more."

Ruhnke and her husband, Ed, have watched Carly suffer lung, respiratory, hearing and visual problems since her birth, while raising their two other children, Kristine, 19, and Eddie, 15.

When Carly is asked what it is like to suffer from Morquio Syndrome, she answers with maturity: "My joints are weak and I can only grow so much," she said.

Carly said dancing makes her happy even though she is often in pain.
"I like to dance because it feels fun and I feel happy when I am dancing," said Carly.

But Carly could not dance on Saturday. Her mother said Carly was too weak to dance and was barely well enough to attend the event.
"It was a lot of fun though," Carly said of the benefit.

Ruhnke credits family friend Holly Byrne for helping her to coordinate the Chinese auction and making it a successful event.
"Carly is an amazing child," Byrne said. "She is smart, sharp and quick-witted."

Byrne, who has known the Ruhnke family for almost four years, said watching Carol Ruhnke stay strong while her daughter suffers motivates her.

"Carol is amazing and she never complains," Byrne said. "She takes it all in stride and she is very inspirational."
Ruhnke said the amount of donations received for the auction was "overwhelming."

"We had 59 baskets, 33 gift certificates and 10 to 12 high-end gifts," Byrne said, adding a waitress for the event walked in with a Melita coffee maker to auction off.

Carol Ruhnke said one wish is for her daughter "to have a better quality of life right now because we don't know what her life expectancy is."

Ruhnke said she is grateful to all of the individuals who made the benefit possible and is also thankful to Toms River Intermediate School East and Berkeley Township's elementary schools for raising $2,000 for Morquio syndrome research.

To make a donation to further Morquio syndrome research, send contributions to Care for Carly, P.O. Box 402, Bayville, NJ 08722.