Landon Rogers, 2, digs for a toy Sunday afternoon at the Rogers' home in Kenai. Landon has been diagnosed with a severe failure to thrive condition as his family waits to take him to a specialist at UCLA Medical Center in California.
Photo by Layton Ehmke
Two-year-old Landon Rogers of Kenai has a mighty big spirit but without further specialized help, his tired and diminutive body might not be able to grow big enough to accommodate it.
Suffering from severe failure to thrive, caused by an underdeveloped gastrointestinal tract and the inability to absorb nutrients, Landon weighs only 16 pounds and measures a mere 28.5 inches tall the size of a 6-month-old.
Hoping to finally find a permanent means to treating Landon's condition, his parents, Bob and Bethany Rogers, pediatrician, Dr. Jeff Penman, and specialist, Dr. Allen Pratt, recommended Landon see gastroenterology specialist Dr. Martin Martin, who is the world's leading authority on pediatric stomach malabsorption at the UCLA Medical Center in California.
"They have done everything possible at (Children's Hospital at Providence in Anchorage) and each new doctor would begin testing over on Landon, so we want to start with the best and spare him unneeded pain," Bethany said.
However, the chances of Landon seeing Dr. Martin are slim due to financial concerns. According to Bethany, Landon's medical care is covered under Denali KidCare, a Medicaid program run by the Alaska Department of Health and Social Services. However, the UCLA Medical Center only accepts out-of-state Medicaid on a case-by-case basis. Attempts to negotiate an arrangement so far have failed, Bethany said.
"It is so sad to think after all he has endured that money would stand in his way of getting help," she said.
Landon's life has been tenuous from the beginning. Born prematurely, at 33 weeks he weighed 2 pounds,15.5 ounces. At 2 months he went into congestive heart failure, had to be placed on a high-frequency jet ventilator and wasn't expected to live through the night. At 3 months he contracted pneumonia. Now, at 2 years old, he's endured an estimated 15 operations and has been on medication since his birth.
He is fed thorough a gastrostomy tube that goes into his stomach with a feeding schedule of two hours on and one hour off. The tube has to be cleaned every day and every three months Bethany must completely remove and change it, a painful and frightening process for Landon.
Landon and his mother have spent almost half his life away from the family, brother, Chase Rogers, 18, and sisters, Sierra Rogers,15, and Anessia Hubler, 10, at Providence in Anchorage due to his condition. He recently arrived home for the first time in 67 days. How long he can remain there depends on when the next emergency arises.
"It's hard on the whole family," Bob said. "When Landon is at Children's Hospital, Bethany stays in Anchorage and the girls and I stay here and then drive up to see them on the weekends."
Bob is the manager of Avis Rent-A-Car. He also home schools one daughter and is the long-distance support system for his wife and young son.
"He is such a good boy. He loves SpongeBob SquarePants and, sadly, he knows how to take his own vitals," Bob said. "It just breaks my heart."
Family and friends describe Landon as cheerful and sweet, considering what he is up against.
"Landon is a fighter," said Amanda Faulkner, infant learning specialist for Frontier Community Services, who works with Landon when he is home. "He is amazing, but what he has to deal with is tough."
Faulkner said that because Landon has spent the majority of his life in a hospital, there are things he has not been able to experience, such as much social interaction, so he is just now learning how to walk and talk.
"The saddest thing is that he associates being naked with pain," Faulkner said. "Even having his socks off or trying to bath him makes him cry."
The Rogers have not given up on a solution being found that would enable Landon to have a less painful, if not normal, life. A call from Gov. Frank Murkowski's office in Juneau last week gave them a sense of renewed hope.
"They asked for a release about Landon so that Gov. Murkowski could speak to Gov. (Arnold) Schwarzenegger (of California) on his behalf," Bethany said.
Denny DeWitt, special assistant to the governor, said Murkowski is in tune with what is going on and is waiting to see the outcome of the talks before stepping in.
With only an estimated year to live, time is running out for Landon, and the Rogers are pressing forward and preparing to go ahead with travel as soon as the needed $60,000 down payment, the cost of the first 30 percent of his estimated visit, can be obtained.
"That is only to walk in the door, not surgery, not travel, not lodging, not food, and then what for the other 70 percent?" Bethany said. "Sell my kids?"
Fund-raising efforts to date have included a bake sale put on by Providence and individual donations. Friends of the family also have posted flyers around town requesting donations.
If a stomach and intestine transplant are needed, Landon and Bethany will be gone for six months, so for now they family is enjoying what time they may have together.
Anyone wishing to make a contribution to Landon's medical fund can make a deposit at Alaska USA Federal Credit Union, account No. 1191979.
Peninsula Clarion © 2016. All Rights Reserved. | Contact Us