A Teenage Girl’s Journey With Kidney Disease

Kidney disease affects people of all ages. Here is a series of three online news articles about a 13-year-old girl from Michigan who was diagnosed with a rare, possibly unique, combination of kidney diseases, a year-and-a-half ago. Her story was published in the Monroe News last spring, written by Caitlin VanOverberghe.

Below you will find hyperlinked titles to the three articles and an excerpt from each:

LaSalle teenager diagnosed as sole patient with four kidney diseases

LaSALLE — There are purple, glittery curtains hanging in the window of Julia DePelsmaeker’s bedroom. The bedspread that covers her mattress is patterned with pink and purple swirls, and stuffed animals line the foot of the bed.

Her walls are covered in colorful draw­ings. Her shelves are full of little knick­knacks and framed photos.

It’s exactly the bedroom any 13-year-­old girl would dream of — except for one thing.

In the corner near the door is a machine. It’s large, but quiet, with cords stretching out in all directions. Above the machine, next to a large and colorful picture of a butterfly, there are poster-sized instruc­tions detailing how to use the device care­fully and safely.

Just by looking at her, it’s nearly impos­sible to tell that Julia is sick. It’s not until she reveals the dialysis catheter protrud­ing from her abdomen that the secret of her disease is exposed.

A year ago, Julia was diagnosed with four rare kidney diseases — nephritis, ne­phrotic syndrome, membranoproliferative glomerulonephritis and IgA nephropathy.

She’s the only person in world to have this particular combination of illnesses. Only two similar patients ever have been documented.

Read more at: http://www.monroenews.com/news/2014/apr/08/lasalle-teenager-diagnosed-sole-patient-four-kidne/

Kidney transplant surgery successful for Monroe student

Julia DePelsmaeker, the 13-year-old Monroe Middle School student living with four rare kidney diseases, under­went a successful transplant surgery Friday afternoon.

Annette DePelsmaeker, Julia’s mother, said the family, includ­ing Julia’s living donor Chris Shields, 25, of Erie, was admit­ted to the Mott Children’s Hos­pital late Thursday evening in preparation for the surgery.

Mrs. DePelsmaeker said Julia was in good spirits all morning prior to surgery and even got a chance to see her new kidney before doctors began the pro­cedure, after they had removed it from Chris.

The surgery lasted about three hours and Julia was placed in intensive care after­ward, which doctors expected. She’ll remain in intensive care for the next few days and won’t return home from the hospital for another two weeks.

Chris’s surgery took several hours as well, but he was up and moving around not long after, his wife Deanna (DePels­maeker) Shields said, and was immediately asking about Julia and how she was doing.

Chris is expected to be re­leased from the hospital some­time Saturday.

Read more at: http://www.monroenews.com/news/2014/may/03/kidney-transplant-surgery-successful-monroe-studen/

Teen home after kidney transplant

Chris Shields, who donated his kidney, and recipient Julia DePelsmaeker, 13.

Chris Shields, who donated his kidney, and recipient Julia DePelsmaeker, 13.

Julia DePelsmaeker, 13, returned to her LaSalle home Monday night after spending 10 days in C.S. Mott Children’s Hospital, Ann Arbor.

Julia had been living with four rare kidney diseases before undergoing a transplant on May 2.

While in recovery, Julia experienced few issues, Annette DePelsmaeker, Julia’s mother, said. One doctor even went as far as to say that “Julia has had the best recovery out of all the transplant patients she’s treated,” Mrs DePelsmaeker said.

“(The doctor) was impressed at how Julia does exactly what they ask of her and doesn’t complain,” she continued.

Chris Shields of Erie, Julia’s living donor, was released within 24 hours of the surgery.

The DePelsmaekers will continue to make routine trips to Mott for the next few weeks so that Julia’s progress can be monitored.

With the exception of those hospital trips, Julia will have to remain at home for two months.

While she cannot return the Monroe Middle School for daily classes, Julia will be able to video call her teachers and classmates during the day.

Read more at: http://www.monroenews.com/news/2014/may/13/teen-home-after-kidney-transplant/

One of the benefits of Canada’s medical system is that medical costs are covered. That is not necessarily the case in the United States. A sidebar to the first article mentioned a “fundraiser to help offset surgery costs.” Here is the invitation as it was published in April 2014:

Fundraisers to help offset surgery costs

Julia DePelsmaeker’s family will host a spaghetti dinner Saturday to help pay for the costs of the kidney transplant, both for her and donor Chris Shields. The dinner will be served from 2 to 7 p.m. at Local 723, United Auto Work­ers, hall, 281 Detroit Ave. Pasta, salad, rolls and desserts will be available from Dena’s Kitchen. There also will be raffles, a silent auction and a DJ. “At first we just thought it would be a pre-transplant party with some of our closest friends,” Debbie DePelsmaeker, Julia’s aunt, said. “But it has grown quickly. We’re planning on hundreds of people coming.” Debbie, who is leading the fundraiser, said the money will go to help pay surgery expenses for Julia and Mr. Shields, to help him make ends meet while he is away from work and to set up a college fund for Julia. Additionally, students at Monroe Middle School are holding a spirit week in Julia’s honor this week. Students can pay $1 a day to participate in dress-up days such as pajama day, decades day and green-for-life day.


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