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Hayden Alvermann was born with red spots and eventually diagnosed with primary juvenile xanthogranuloma and secondary hemophagocytic lymphohistiocytosis, two rare blood diseases.

Benefit planned for baby boy

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When Hayden Alvermann was born on Dec. 8, it didn't take long for doctors to figure out something was wrong.

The son of Eric and Shannon (Briese) Alvermann of Clear Lake, Hayden was born with red spots all over his body, said Shannon. Doctors weren't that concerned about them until later, when Hayden was given his first set of vaccinations and wouldn't stop bleeding.

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That's when the tests started, Shannon said.

"It was test after test after test," she said. "It seems like this whole five weeks has been 'hurry up and wait.'"

The first test showed Hayden's platelet level at 3,000, well below the normal range of 100,000-150,000.

That's when he was transferred from Westfields Hospital to Children's Hospital in the Twin Cities.

"They thought it was CMV (a common virus that is easily fought off by those with a healthy immune system) but that came back negative," she said.

Hayden was eventually diagnosed with Parvovirus, which might have triggered a domino effect of other problems.

Hayden's exact diagnosis is unknown until the results of a genetic test become available.

Doctors' best guesses right now are that Hayden's Parvo JXG (juvenile Xanthogranuloma), which then triggered HLH (hemophagocytic lymphohistiocytosis), a very serious and rare blood diseases.

Hayden will undergo eight weeks of chemotherapy in hopes that he goes into remission.

"It's treated like cancer, but it's not cancer," Shannon said.

Doctors are hopeful that Hayden's diagnosis will come back as JXG primary and HLH secondary, which means it's not genetic and unlikely that Hayden will need a bone marrow transplant.

"Now it's just a waiting game," Shannon said. "This whole thing has been a waiting game."

Because there is a possibility that Hayden's HLH is genetic, his older brother, Mason, was also tested. His results came back negative.

Shannon said she was shocked when she found out Hayden was sick.

"Initially I was shocked and cried all the time," she said. "Then I got mad. I felt like I should've known during my pregnancy that something was wrong... my pregnancy was normal, the ultrasounds were normal. Eventually you just go numb."

Mason, 2, has also been having a hard time with it, Shannon said.

"He knows he has a baby brother and he knows his name is Hayden, but he's 2. He doesn't really understand," she said.

The Alvermanns said it's been difficult to react to Hayden's condition because each day seems to bring something new.

"Four weeks ago we were told the diagnosis didn't look good," she said. "That's when they thought he had genetic HLH."

The Alvermanns spend four to five days at the hospital with Hayden, they said. Because his immune system is compromised, hospital staff wants to limit the amount of interaction he has with other family members. That means Mason has been spending a lot of time at his grandparents' house.

"It's hard to juggle when you have another 2-year-old at home," Shannon said.

Friends of the Alvermann family are planning a benefit to help with Hayden's ongoing medical costs.

Healing Hands for Hayden will take place April 21 from 3 p.m. to 10 p.m. at Ready Randy's in New Richmond. The benefit will feature a spaghetti dinner, silent auction, music by Ken's Country Classics and kids' activities. Admission is $5 and an additional $5 is required for the meal.

"Right now we're looking for local businesses to sponsor the benefit," Shannon said. "We're making T-shirts, so each of those sponsors will be featured on the shirts."

In addition, treasure jars will be distributed throughout New Richmond, Amery and Clear Lake.

An account has been set up for Hayden at WESTconsin Credit Union. Anyone looking to donate can do so by visiting any WESTconsin branch and mentioning Hayden Alvermann's benefit. For more information, contact Dawn Greening at dawn.greening@hotmail.com. Hayden's progress can be tracked by cisiting www.ca ringbridge.com/visit/hayd enalvermann/.

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