13 CARES: A metro family learns how to live with their son’s rare diagnosis
Most parents just want their kids to be happy. It sounds simple but it isn’t always easy, especially when life throws some unexpected challenges your way. For the Wheelock family, those challenges started when their oldest son Lincoln was still a baby.
“At six months and at nine months Lincoln didn’t crawl,” explains Trisha Wheelock, “he couldn’t lift his head up.” Lincoln is living with one of the rarest conditions known to medicine. “When he was two and a half years old, we noticed a lump on the back of his neck so we went to the pediatrician.”
Trisha and her husband Lee took Lincoln to various specialists and each one had their own theory. Doctors ordered biopsies, CT scans, and MRIs and delivered three to four different diagnoses within six weeks.
“We were so anxious,” says Trisha, “not knowing what was going to happen and being so fearful about what was going on.” It turned out that knowing what was wrong with Lincoln was just as bad as not knowing. “We’d never heard of this. We got home a Googled it right away. It was terrifying and life altering. The doctors said, this changes Lincoln’s life and it changes your life too.”
Lincoln has Fibrodysplasia Ossificans Progressiva or FOP. It’s a genetic mutation that causes bone to form in muscles, tendons, ligaments and other connective tissues. “So elbows will lock into place, knees will lock… you grow a second skeleton in your body that permanently immobilizes you. Right now there isn’t anything that we can do to stop the bones from growing.”
There is no cure. There’s not even a way to treat FOP and every typical toddler adventure could result in an injury that will never heal. “That takes my breath away and I have a gut check that life isn’t normal. We have a new normal,” Trisha explains, “there are some patients, who can only move their lips… hopefully that won’t happen for Lincoln.”
In spite of the severity of Lincoln’s condition, Trisha seems upbeat. She credit’s Lee for helping her keep a positive attitude. “When we were first diagnosed I woke up every day and cried. I was sad, discouraged and angry. He finally told me one day, we’re going to decide whether we’re going to be happy or not. We decide whether this ruins our life, or we’re thankful for the time we have and all the blessings we have.” And that’s part of Lincoln’s lesson, that what happens to you isn’t as important as how you react to what happens.
“I think that their strength and courage is so inspiring,” says family friend Kristie Kolsrud and that’s why she decided to help. “The idea is that we’re all going to take leaps for Lincoln so that he can keep leaping and playing too.” She’s hosting a fundraiser to help find treatment and hopefully a cure. “Since Lincoln is so fun-spirited and we love kids we thought, let’s do a children’s’ carnival!”
“We’re trying to make a difference here,” says Lincoln’s aunt Kristina Sligh, “that’s the only way we’re going to change something. The only way there will be a cure or treatment is if we get out and do something.” Both women say Lincoln’s lesson is about living. “It really makes life feel so much more special and important. You value things differently.”