Mayer family shares son’s battle against DMS

Charlie Hoeft was diagnosed with Diffuse Mesangial Sclerosiscurrently (DMS) last November and is currently waiting for test results to see if his father, Jeff Hoeft, is a suitable organ donor.(Submitted photo)

Charlie Hoeft was diagnosed with Diffuse Mesangial Sclerosiscurrently (DMS) last November and is currently waiting for test results to see if his father, Jeff Hoeft, is a suitable organ donor.(Submitted photo)

Observing from the outside, 2 year old Charlie Hoeft of Mayer looks like your normal cute, playful, sometimes troublesome, everyday toddler. However, from the inside, Charlie is fighting for his life.

“Nope, it was a shocker,” said Charlie’s mother, Sarah Hoeft, when first hearing about her son’s condition.

It all started with a concerned visit to the doctor last October, when Charlie was 20 months old. Jeff Hoeft, Charlie’s father, and Sarah were the parents of two children, Charlie, and his older sister, 3-year-old Natalie. The couple was also expecting their third child, Willa, who was due February 2014.

“October 12 we first started to notice the symptoms,” Jeff said. “The difference in Charlie was like night and day — he just couldn’t move.”

Charlie’s normal rambunctious self seemed to soften, and his condition worsened from there. Severe swelling in Charlie’s face and eyelids prompted Jeff and Sarah to visit Catalyst Medical Clinic in Watertown.

Charlie was diagnosed with a thyroid disfunction due to an abnormal amount of protein found in his urine. Charlie was prescribed thyroid medication and the Hoeft family went home hoping for the best.

However, after weeks on the thyroid medication, Charlie’s condition wasn’t improving and his face became even more swollen. In November, Charlie was rushed to the Children’s Hospital and Clinics of Minnesota located in Minneapolis.

“We were in the hospital for a week,” Sarah said. “By the third day at the hospital, we found out about Charlie’s condition.”

Charlie underwent a biopsy, in hopes to uncover his ailment. The results were surreal to the Hoefts. Charlie was diagnosed with Diffuse Mesangial Sclerosis (DMS), a rare genetic disease that filters calcium out of one’s system, which causes scarring to the kidneys. In Charlie’s case, the scarring happened so quickly and severely that the damage became irreversible by Charlie’s third birthday.

Out of all the possible conclusions the Hoefts faced when taking Charlie to the hospital, “this one definitely wasn’t the best case scenario,” Jeff said.

This now pits Charlie and the Hoeft family against the clock. With approximately eight months before his third birthday, Charlie needs a kidney transplant in order to survive.

What may be even more terrifying for the Hoeft family is that DMS is a genetic condition and there is a one and four chance that any child conceived by Jeff and Sarah may develop the disease.

“We haven’t seen anything in Natalie yet,” Jeff noted. “They still have to check Willa. She’s too small to give (conclusive) urine samples. It’s something we’re not worrying about right now.”

What the Hoefts are worrying about is their son receiving a kidney transplant. Jeff is the first in line and is currently waiting on results to determine whether he is a candidate or not. Considering Charlie’s age and small stature, it’s a process to conclude if Charlie will be able to accept Jeff’s kidney.

Other options may also be available.

“If Jeff isn’t a match, my two sisters are waiting in line,” Sarah said.

But even if a kidney transplant is successful, Charlie still faces a daunting road. Even with a new kidney, transplants generally last only 15 years on average; after that, the body starts to reject the foreign organ and Charlie will be in need of yet another kidney.

In the midst of prayers and waiting on test results, the Hoefts are still doing everything necessary to fight for Charlie. A bookshelf on Jeff and Sarah’s wall is bowed in the middle, strained from the medical books as thick as encyclopedias that explain Charlie’s rare condition. Countless hours of research consumes Jeff’s time after coming home from work while Sarah takes care of Charlie and his two sisters at home.

In addition to the 13 different medications he takes daily, Charlie is on daily 12-hour peritoneal dialysis, which helps remove waste from one’s blood when the kidneys are unable to do the job adequately. The dialysis is preformed at the Hoeft’s home, which saves a taxing daily drive to Minneapolis – about the only convenient thing that’s transpiring.

Since dialysis, Charlie’s energy has been rejuvenated, and he seems to be his old self.

“When he was really sick, he stopped moving, he would just sit there,” said Sarah. “Since dialysis, he’s climbing on everything, acting more like the good old Charlie.”

But soon, dialysis will run its course and Charlie will need a new kidney to survive. Between now and Charlie’s recovery from the kidney transplant, the Hoefts will be faced with an abundance of medical bills, stemming from current medical needs and future medication costs.

“Cheering for Charlie” is a fundraiser being held Saturday, June 21 from 3 to 8 p.m. at the Mayer Community Center. The benefit will consist of a meal, games, and a silent auction. The fundraising committee respectfully requests a donation for the silent auction. Any donation contributed will be greatly appreciated and every penny will help. To stay updated with Charlie and the Hoeft family’s progress, visit www.hoeftfamily.com and click on Charlie’s name.

Send donations to: Cindy Grossinger, 6125 Upland Ave. New Germany, MN 55367. If donations are by check, make payable to “Charlie Hoeft Benefit Account.” For more information, contact Darleen Wandersee at (952) 955-1615.

Contact Christopher Officer at christopher.officer@ecm-inc.com

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