Toy drive planned in honor of HaydenAt this time last year, Eric and Shannon Alvermann were in a state of shock.
By: By Jackie Grumish, New Richmond News
At this time last year, Eric and Shannon Alvermann were in a state of shock.
Hayden, their second son, was born Dec. 8 and diagnosed with Parvo JXG (juvenile xanthogranuloma), which then triggered HLH (hemophagocytic lymphohistiocytosis), a very serious and rare blood disease.
In April, after undergoing chemotherapy and several surgeries, Hayden was sent home on hospice care (with feeding tubes and on oxygen). The doctors told the Alvermanns there was no more they could do for him.
To the surprise of everyone, that’s when Hayden started getting better.
“When he came home he was miserable,” Shannon Alvermann said. “We started treating him like a normal baby and he started getting better.”
In July, Hayden’s feeding tubes were removed and he’s no longer on oxygen.
“We still do weekly therapy and have to see a doctor every three months,” Shannon Alvermann said. “But he’s in remission.”
The change in his attitude has been phenomenal, she said.
“He’s the happiest baby ever,” she said. “It’s like the whole last year of his life never happened.”
There are physical signs that make Hayden’s illness obvious to most people, she said.
“He has scars from his surgeries and he’s only 15 pounds,” she said. “He’s a 1-year-old trapped in a 4-month-old’s body.”
Hayden is crawling, sitting up, and just beginning to talk, she said. He also loves to dance.
“It’s hard because when people see him and find out he’s 1, they make comments like I don’t feed him enough or ask if he’s sick or ‘what’s wrong with him,’” she said. “They don’t know what he’s been through.”
She said it’s difficult for her to look at the photographs from the first few months of Hayden’s life.
“We’re just trying to move forward, but Hayden’s life has touched a lot of lives,” she said. “If Hayden is small for the rest of his life, I’m OK with that. He’s alive.”
Hayden’s doctors are beside themselves, she said. No one is sure what his prognosis is.
“He’ll probably be monitored for the rest of his life, but we’re just thankful we didn’t have to bury him,” she said.
Shannon Alvermann said she’s also thankful for New Richmond and the people who were there for her family during their time of need.
“We couldn’t have gotten through this without them,” she said. “People are still following up with us a year later, asking if we need anything. That’s a blessing for us.”
Hayden’s story is just one of many to come out of Children’s Hospital in St. Paul, Minn., said Lindsay Greening, a family friend.
“We don’t want people to forget all the other sick babies out there,” she said.
For that reason, Greening has organized Santa’s Healing Hands, a toy drive to benefit the children who will spend Christmas at Children’s Hospital.
“Hayden is my inspiration, but how many other sick babies are out there?” she said. “We just want to give them a happy Christmas.”
Greening is collecting new, unwrapped gifts for children aged newborn to 18.
“We’re looking for gifts for a wide variety of age groups,” Greening said. “Crafts, books, slippers, movies, games… anything that will keep them entertained. These families have so much on their minds that the last thing they’re going to think about it going out and shopping for Christmas.”
Alvermann said while she remembers Hayden’s first Christmas, it’s still pretty surreal to her.
“It’s like time stops for you,” she said. “It’s hard to explain.”
Greening said that while she’s happy Hayden will be spending this Christmas at home with his family, she wants the public to remember there are other kids just like Hayden who will be spending Christmas at Children’s Hospital.
“It’s sad, but you don’t really think about it until it affects you,” Alvermann said. “You don’t think about those kids at Children’s.”
Greening said she hopes people remember that Christmas is the season of giving.
“You could go out on Black Friday about buy yourself a new TV for $148, but how many kinds would that $148 buy for?” she said.
Items are being collected now through Dec. 19, Greening said. There are no drop boxes around town; however, Greening said she plans to be at Walmart in New Richmond from noon until 4 p.m. on Dec. 15 collecting items. Other drop off times can be arranged by emailing Greening at email@example.com.
In addition to gifts, monetary donations can be made by visiting http://givemn.razoo.com/story/san tashealinghands. All monetary donations will be used toward Santa’s Healing Hands.
A list of suggested donations can be viewed at www.childrensmn.org/giving/giving -toys-and-gifts/wish-list.