WINONA LAKE, Ind. -- A new life gives us promise for the future and a new sense of meaning.
But what happens when you bring your little bundle of joy home only to find out their future may be shortened by a life threatening disease?
That’s the case facing little Myles.
Two-year-old Myles Bartley of Winona Lake may not understand the gravity of needing a kidney transplant, but this toddler knows this machine is what is keeping him alive for now.
Mom, Sarah, and dad, Shawn, say doctors knew Myles kidney was small while Sarah was pregnant.
“The specialist told me that I would have a healthy pregnancy and a healthy baby,” said Sarah.
But when they got Myles home from the hospital they knew something was terribly wrong when he became lethargic and stopped eating.
Myles was diagnosed with end stage renal failure, and, after many trips to Riley Children's Hospital, they have been hooking their little bundle of energy up to dialysis every night before bed. It's been keeping him alive since he was just two weeks old.
“Every day, every night, for 10 hours a night,.” explained Sarah.
The family says big sister Vayda gets a lot of credit for keeping her little brother active and healthy.
Still, he recently had one kidney removed and his remaining kidney has only 5 to 10 percent function.
So now the family is waiting to go back to Riley Children's Hospital where Myles’ aunt, who is a perfect match, will donate one of her kidneys.
“We have to get his weight up and just make sure my sister is healthy so she can donate,” said Shawn. “She's got a couple steps she's got to continue with before we can start the process.”
As upbeat as they try to be, Sarah said it has been hard on the family, especially Myles.
“He wakes up a lot crying, he can't tell me yet what's wrong with him,” she said. “I think it would be different if he just started dialysis, I think it would be a lot harder, but since he's been on it since birth, it's just his life.”
“No kid should have to go through this,” said Shawn.
A life they are trying to keep as normal as possible for both their children.
“Pretty much it's just our life now,” he added.
The Bartley's have a "Give Forward" page to help raise donations for all the extra costs they are facing with medications, and a two month stay in Indianapolis.
A former Marine, an Army Ranger for the Indiana National Guard, along with 10 other solders, will be walking 12 hours, from Warsaw to Fort Wayne to raise money for Myles. The walk is Friday, June 20. Donations made by made in the name of Myles Bartley at any Lake City Bank.
NewsCenter 16 will continue to follow Myles through his transplant and will let you know how he does.