Summer Camp: A Special Time for One Glen Ellyn Boy

Joshua DiGiacoma is 12. He is away at camp this week where he is enjoying swimming, horseback riding and sleeping in a log cabin.

Pretty typical, you could say.

But there was a time when it was difficult to comprehend a future in which Joshua would be a fun-loving junior high school student. Before he was born, his parents Lisa and Mark DiGiacoma of Glen Ellyn knew there was trouble.

He was diagnosed in vitro with prune belly syndrome. According to MedlinePlus, a service of the U. S. National Library of Medicine and the National Institutes of Health, prune belly syndrome is a group of birth defects that involve poor development of the abdominal muscles and other problems.

The causes of prune belly syndrome are unknown, and it was not in the DiGiacoma family’s medical history. The condition affects mostly boys, and it was affecting their precious unborn son.

While in the womb, the developing baby's abdomen swells with fluid. That fluid disappears after birth, leading to a wrinkled abdomen. Prune belly syndrome is a serious and often life-threatening problem. Many afflicted infants are either stillborn or die within the first few weeks of life from severe lung or kidney problems, or a combination of birth problems. Some newborns survive but continue to have problems.

While as a baby and very young child, Joshua spent the equivalent of one year in the hospital. He is a veteran of 22 operations.

“I don’t remember (the operations). I feel good and am glad I don’t have to do that again,” he said.

He beat the odds.

Today, his interests vary from playing basketball, playing violin, learning about orca whales and reading. He is now reading about World War II, a war his grandpa fought.

It is important to his parents that he leads a normal life that healthy children enjoy, and that includes attending a normal summer camp. But they want to make sure that he gets the medical treatment and supervision that a transplant recipient needs. That’s where Kidney Camp comes in.

Kidney Camp is a free weeklong camp for children with kidney disease or transplants.

Joshua and approximately 14 other youngsters from Illinois and Wisconsin are attending the National Kidney Foundation of Illinois’ Kidney Camp at YMCA Camp Duncan in Ingleside, Ill. For one week, children ages 7 to 15 with chronic kidney disease, on dialysis or living with a transplant can experience the freedom, fun and independence of a traditional overnight summer camp.

Since it was started in 2004, Kidney Camp has offered nearly 100 youngsters the opportunity to participate in a normal camp experience while under the supervision of trained medical professionals.

Joshua attended Kidney Camp last year and had such a good time he signed up again. This year campers are taking part in activities such as swimming, boating, horseback riding and arts and crafts. All of this is enjoyed in a safe environment where they continue to receive their medications and/or dialysis treatments at a local clinic.

National Kidney Foundation of Illinois staff member and Nurse Practitioner Nancy LePain has supervised Kidney Camp for seven years, and is in charge of administering medications, taking campers to dialysis treatments and generally making sure that every child is safe at camp.

“Kidney Camp is my favorite program offered by the National Kidney Foundation of Illinois,” LePain said in a prepared statement. “Every year I get to meet children who have overcome real obstacles in their lives. Many of them just want to be treated like normal kids, and Kidney Camp offers them the chance to do that.”

She is tending to Joshua’s medication needs this week, such as the anti-rejection meds his body needs.

When Joshua comes home, he will continue perfecting the theme song to the movie Free Willy, combining his love for whales with his love for the violin. He will play with his 4-year-old sister, AnneLise Minyun. “She is from China,” he said.

Does he get along with Min-Min, the family’s affectionate nickname for her? “Yes, especially when she behaves herself,” he quipped.

And, he is looking forward to attending Hadley junior High in Glen Ellyn in the fall, where he will be a sixth grader. “I’m excited. It is a new school.”

What does he want to be when he grows up? Who knows? Maybe he will be a classical violinist. Or a pilot. What the DiGiacomas do know is that Joshua will indeed have a future.