Without a transplant, Jaren's future is uncertain, complicated by the fact that this form of heart disease is very rare.
There have been only six cases of idiopathic restrictive cardiomyopathy diagnosed in the United States, according to the New England Journal of Medicine. The disease enlarges the right and left atriums at the top of the heart and restricts the flow of blood in the left and right ventricles of the heart. It has been described as an old man's heart in a young body.
Jaren currently attends second grade at Lake Ripley Elementary School in Litchfield.
"Jaren is not able to walk long distances and he can't run. He is restricted from physical education (at school)," Kayla said.
Kayla explained that because the disease is very rare, there is very little information available. The disease is incurable without a transplant, and according to their doctors, should be done as quickly as possible.
At this time, Kayla stated, Jaren's condition has not worsened, but has remained stable. However, the Wining's have been advised that the disease can progress quickly.
"We don't know when that might happen, it could be in a week, a month, or years," Kayla said.
Until early last year, Jaren led the typical, normal life of a young, growing boy. But he began to experience abnormal fatigue with physical exertion. In February, Jaren underwent an EKG and a heart x-ray, but it wasn't until after doctors performed a heart biopsy in April that he was diagnosed with idiopathic restrictive cardiomyopathy.
"They (doctors) went through every possible test and procedure to find the disease," Kayla said.
Kayla was referring to the doctors at Fairview Hospital in Minneapolis.
"They did everything they could. He wasn't seen by only one doctor—he was seen by everyone of them, it was a group of doctors. I am very satisfied that they were very thorough, and," she added, "they are very good at transplants."
Jaren has already gone through the pretransplant procedure to officially qualify him to be placed on the waiting list for a donor heart.
Currently, however, the Winings are hopeful that they receive good news from their insurance company which must decide if they will approve coverage for the transplant.
Either way, from this point on, it's a waiting game to receive a new heart for Jaren.
"It all depends on a lot of different situations, it could take months, or a lot more," Kayla said.
To help defray the staggering medical bills, a group of people met last week in Watkins to plan fund raisers. The core group consisted of Kayla's co-workers at Proworks in Litchfield, as well as other concerned volunteers.
At this time, a benefit is being planned for Sunday, Oct. 24, at the Litchfield VFW.
Proworks co-worker Barb Knudsen, Watkins, explained, "We are trying to hold an event that will be of interest to all ages, a family event. We are planning a dinner and a silent auction, and maybe, penny auctions and cash drawings."
Although all the details for the event are not complete, Knudsen noted other suggestions that are being considered for ongoing fund raising activities. The committee will be contacting organizations, cash jars will be distributed to area businesses, and buttons imprinted with Jaren's photograph will be sold.
A fund raising committee cochaired by Knudsen and Audrey Oster, has been formed. They offer their home and work phones for anyone willing to help or making a contribution. In Watkins call Knudsen at 320-764-2260 or Oster at 320-764-5055. At Proworks, call Knudsen at 320-693-6257 or Oster at 320-693-7250.
A fund has also been established at the Community First National Bank in Paynesville for Winings. Anyone wishing to make a donation can also drop it off at the bank.
(Editor's Note: The Winings are members of the Paynesville Grace United Methodist Church. The article was reprinted from the Journal Patriot, Eden Valley and Watkins.)
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