Local Boy Bravely Fighting Rare Disease

October 15, 2018

 

Four and a half year-old Jace Petersen, of Portland, was recently diagnosed with Krabbe Disease.  This is a form of Leukodystrophy, a rare genetic disorder of the central nervous system which destroys the white matter of the brain. 

 

According to the Mayo Clinic, “Krabbe disease affects about 1 in 100,000 people in the United States.” 

 

Young Jace is being treated at Pittsburgh Children’s Hospital.  Treatments include blood and bone marrow transplants.

 

Jace is the son of Cheryl Huhn-Petersen and Julian Petersen.  Cheryl and Julian have been off work since the diagnosis so that they can accompany Jace to Pittsburgh.  As with many families battling a medical situation, this has put a huge strain on the family’s finances.

 

Friends and family will be holding a benefit to support Jace and his family on November 10th.  The event will be held at Grand River Conservation Club located 7345 Lyons Road in Portland from 4:00 PM to 8:00 PM.  The benefit will include a raffle, and will have car decals and t-shirts available for sale/order. 

 

If you would like to donate to the raffle, you can contact Patti Fish at 517-927-0728.  All other benefit questions should go to Dale at 517-647-4791. 

 

A Go Fund Me campaign has also been started.  It can be found at gf.me/u/mv3dfg.  There are also donation cans set at various local businesses. 

 

Jace’s aunt Sara (Huhn) Zischke told the Beacon recently that, “Jace is in high spirits for someone going through so much. He loves John Deere tractors and Paw Patrol. His sister (3-year-old Carlei) is here in Portland staying with family missing her brother.”

 

With Halloween just two weeks away, Jace will not be able to Trick-or-Treat like most kids his age.  If you would like to send him a card or care package for Halloween, you can mail it to “Ronald McDonald House Charities of Pittsburgh and Morgantown, Inc., 451 44th Street – Penthouse Floor, Pittsburgh PA 15201. Petersen – Room 808.”

 

According to a post on Facebook, “Jace can receive snacks, small trucks, stickers and such, if you want to send something additional too.” 

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