Robin Huebner Reports: 10-year-old Fargo boy with cystic fibrosis awaiting double lung transplant (w/ video)FARGO - A double lung transplant could restore Jordan Peterson’s childhood, which has been sidelined by major complications of an already devastating genetic disease. “I’d rather have a short and fun life than a long and boring life,” said the 10-year-old Fargo boy with cystic fibrosis, who was just cleared for the transplant.
By: Robin Huebner, INFORUM
FARGO - A double lung transplant could restore Jordan Peterson’s childhood, which has been sidelined by major complications of an already devastating genetic disease.
“I’d rather have a short and fun life than a long and boring life,” said the 10-year-old Fargo boy with cystic fibrosis, who was just cleared for the transplant.
The fourth-grader at Oak Grove Elementary speaks with a level of maturity far beyond his years.
“I was happy, I was excited, I was nervous. I was thankful that I could be on the (transplant) list,” said Jordan from his south Fargo home Monday.
He and his family got the news last week on a trip to Texas Children’s Hospital. Expecting to go for an evaluation only, they left Houston knowing that Jordan is definitely sick enough to need a transplant and the sooner, the better.
“We’ve reached a crossroads,” said Jordan’s father, Dan Peterson. “He has no quality of life right now.”
Jordan is on many different medications, and must go through more than two hours of treatment daily to loosen up the secretions in his chest.
With lungs functioning at just 23 percent, it’s like having to breathe through a very small straw, said Jordan’s mother, Annette Peterson.
Jordan sometimes has to nap in the nurse’s office just to get through the school day. He had to give up his favorite sport of hockey and can’t run or be active with friends.
“He deals with it at an incredible level,” said Annette. “He still has that child-like faith that says I can do anything; I can be anything when I grow up.”
Only a handful of double lung transplants are performed on children in the U.S. each year. Dan Peterson says the University of Minnesota won’t perform the surgery on anyone under age 16, and facilities in Pittsburgh and St. Louis turned them down because of ongoing bacterial and fungal infections Jordan has in his lungs.
Jordan was approved for the transplant by Dr. George Mallory, a pediatric pulmonologist at Texas Children’s.
“He’s world renowned, you know,” said Dan Peterson, “in his words, ‘a little crazy,’ but he really feels they have the capability to help Jordan.”
The decision means the family must temporarily relocate to Houston.
In a few weeks, they will travel down south in the RV they typically use for camping and Bison tailgating. They’ll stay at an RV park not far from Texas Children’s. Doctors told them they need to be within an hour’s drive from the hospital at all times, in case donated lungs become available.
They first considered splitting up the family, with Dan staying in Fargo with Jordan's younger brother, Jesse, and Annette going with Jordan to Texas.
But in the end, they decided to go as a family.
“This is Jordan’s journey,” his father said, “and we all want to be there with him for that.”
The move will be bittersweet for the family and so many of the people who know them.
Jordan’s best friend, 9-year-old Grayson Wetch, summed it up this way: “I was kind of sad and happy at the same time, because I want him to get it (the transplant), but I also don’t want him to go for such a long time and not be able to see him.”
The family will try to stay connected to their friends here in the valley as much as possible. Jordan will talk via Skype when he can with classmates and teachers. Dan will do some commuting to keep his brokerage business here going.
A fundraiser next month will help defray some of the family’s travel, moving and medical expenses.
The support means a great deal to the family, because Jordan’s journey will be a long and difficult one. Annette says it’s a journey that her 10-year-old is prepared for.
“You know, we’re firm believers in our faith, and I truly think God has prepared him on a totally different level than us,” she said.
A fighting spirit will help, too – something Jordan certainly has.
“He hasn’t tried to call it quits or give up. Sometimes he gets frustrated to the point of showing anger, but I don’t think that’s necessarily a bad thing, because that is a fighting spirit, and he’s going to need that for the long haul,” she said.
Readers can reach Forum reporter Robin Huebner at (701) 451-5607
If you go
What: “Jordan’s Journey” fundraiser
When: Oct. 7 from 2:30 to 5:30 p.m.
Where: Oak Grove Elementary in Fargo
INFO: $10 entry per person will help defray medical, travel and moving costs. Includes Games Galore, music and silent auction
How to help: Donations can be sent by mail to: Bank of the West, Jordan’s Journey, 520 Main Ave., Fargo, ND 58124