Three brothers with rare disease flying to Hawaii thanks to a wishFargo, ND (WDAY TV) - A Grace City, North Dakota family facing a devastating diagnosis had a reason to smile tonight.
By: Becky Parker, WDAY Staff Reports, WDAY
Fargo, ND (WDAY TV) - A Grace City, North Dakota family facing a devastating diagnosis had a reason to smile tonight.
All three boys, the youngest is 7, have the same rare genetic disorder. But tonight, they were surrounded by family as Make-a-Wish sends them to Hawaii.
We are here at Newman Outdoor Field where the Kulsrud family had a special send-off at tonight's Redhawks game.
Lane, Ty, and Tanner were diagnosed with PKAN a year ago. It causes an excess build-up of iron in the brain. But thanks to Make-a-Wish, tomorrow they fly to paradise and leave some of those worries behind.
The 12 hour plane ride to Hawaii is nothing when compared with the journey the Kulsrud family has already endured.
The diagnosis came about a year ago. Not one, but all three of their boys had PKAN, an extremely rare genetic disease that affects only a few hundred people in the U.S. There is no known cure.
Laura Kulsrud, Mother: "It's a mutated gene that sends too much iron to the brain and causes some neurological damage. So, we are on some experimental medications right now trying to get it worked out."
PKAN can cause slurred speech, loss of balance, and uncontrollable muscle contractions. But tonight, the Kulsruds aren't worrying about the disease. Instead, they are enjoying a baseball game and preparing to leave on a weeklong trip. It was 12-year-old Lane's wish to go to Hawaii.
Lane Kulsrud: "So I could swim with the dolphins."
Kayla Foltz, Make-a-Wish Foundation: "It's been maybe a year ago that we started working with the Kulsruds. They have three boys that are eligible for wishes."
A trip to Texas in February was Ty's wish and a wish is still in the works for Tanner. Lane has been affected most by the disease, often using crutches to get around.
Laura Kulsrud: "The trip will give us a chance to just forget about the doctors and just be together."
The Kulsruds leave early tomorrow morning for their trip to Hawaii, a great way to kick off summer vacation for these three brothers.