Therapy, lots of love help toddler
Trevor Leeker has amazed a lot of people in his lifetime.
Nearly 20 months old, he has surpassed each life expectancy doctors have given him. He responds to regular physical and occupational therapy by improving. He has battled pneumonia three times and won.
"My doctors won't tell me anymore time lines, because Trevor's amazed them," said Michelle Leeker, his mom.
Trevor has Krabbe disease, a genetic disease passed on by both mother and father. When Trevor was diagnosed in late March, doctors at the University of Kansas Medical Center said he would live less than another year more realistically just two to three months.
When that two or three months went by, the doctors said 18 months was about the maximum life expectancy for the disease. He surpassed that date, too.
Time lines are no longer being handed out, and all involved in Trevor's care are giving him the best life he can have.
"I think his life has been better because of his different therapies," Michelle Leeker said. "He is more relaxed."
Trevor receives physical therapy, occupational therapy and hippotherapy to strengthen muscles, improve flexibility and make breathing easier. "Hot tub" therapy twice a day helps his muscles relax.
All but one of the therapies are done at the Leeker home south of Baldwin. When it's not too cold, Trevor receives hippotherapy therapy on horseback at LMP Farm, north of Baldwin. Michelle Leeker said hippotherapy improves Trevor's respiratory system.
Yet improvement is not always the answer when Bill and Michelle Leeker are asked, "How is Trevor doing?" Trevor has good days, and bad days.
On a good day, the physical therapist may work on range of motion, support, flexibility and arm support so that the rib muscles stay in shape for breathing. On a bad day, the therapist will concentrate on stretches to help Trevor breath. He receives breathing treatments everyday and is fed formula through a feeding tube. His vision seems to fade and then return.
"When people ask me, all I can say is he's doing better than we ever expected," Michelle Leeker said. "But we don't know what tomorrow will be like."
Trevor has had pneumonia, a complication of the disease, three times since fall. His family didn't think he would live through the first, and most serious, case.
"If it is bad out, he does not go out," Michelle Leeker said. "It's not like he catches a cold, he catches pneumonia."
Yet Trevor has not been hospitalized since he was diagnosed with the disease. That's how Bill and Michelle Leeker want it.
"We worked it out with our doctor when we left the hospital when he was diagnosed that he wouldn't go back to the hospital," Michelle Leeker said. "We have all the equipment here."
Bill Leeker has resumed working full-time. Michelle is on a year's paid leave from teaching at Kennedy Elementary School in Lawrence. Her leave for catastrophic circumstances is up in March. She can choose to take the rest of the year off, unpaid, or return to work.
"In my mind I keep thinking I am going back to work," she said. She visits her class on Thursday mornings, to keep in touch with the students. "We can't afford for me not to. I'm working on getting nursing care while I am gone."
Medical bills have already consumed funds from a community benefit for the Leeker family in the spring. And both incomes are needed to pay for regular expenses, such as $200 for Trevor's monthly medications and $250 for a month's supply of formula.
Trevor, at 26 1/2 pounds, outweighs any concerns over expenses. Michelle Leeker said he has a great expression when he is relaxing in the hot tub which was provided by the Fox 4 Love Fund or feeling the soft fur of the rabbit his 6-year-old brother Zac brought home from his classroom during Christmas break.
And Zac has been a good big brother. The Leekers thought Zac was being selfish when all the Christmas presents were opened and he said, "Is that all?" Yet what he was expecting was a letter from Santa Claus for Trevor, telling his little brother that he didn't have the disease anymore.
What Santa did leave was a star named after Trevor and a telescope for Zac to always keep him in view.
The Leekers don't know when the telescope will be needed.
"From talking to parents on the Internet, we know that every child is different," Michelle Leeker said. "The average age they make it to is 18 months. Then we know of one that is 3-years-old, and one that is five. I don't think that is in the cards for us. We might be surprised."