An artist's rendering of what the suites will look like on the third floor of the Eagles Theatre. Photo provided
By Joseph Slacian
Two local organizations made presentations Tuesday, Feb. 14, before the Northeast Indiana Regional Development Authority for local projects.
Representatives from the Honeywell Foundation made a presentation seeking a $996,567 grant for the Eagles Theatre renovation project.
In addition, representatives from the Wabash River Trail made a presentation seeking $960,236 for the trail project in Lagro.
by Eric Stearley
When Myles Bartley came into the world, he was dealt a tough hand. Just two weeks after birth, Myles was diagnosed with End-Stage Renal Disease. Now two-and-a-half-years-old, Myles is hooked up to a dialysis machine every night for ten hours as he waits for a new kidney.
Myles is the son of Shawn Bartley and Sarah Rife. Sarah’s mother, Bridget Harner has been a custodian at Metro North Elementary for 18 years. After keeping up with Myles’ progress over the past two years, the school’s staff decided to get the kids involved to help the little guy. They told the students about Myles’ condition and started a “Smiles for Myles” fundraiser. For every $10 donated by students, a smiley face was put up on the bulletin board near the school’s entrance.
“They’ve been very excited about it, and when we kicked it off, Myles and his family came, and that was just neat to see him,” said Metro North Principal Janette Moore.
The staff set a goal of $500, expecting to hit it over the course of the last three weeks of school. That goal was surpassed on the first day. When Myles, his mother, and his sister, Veda, came back to the school on May 27, they were presented with a check for $2,035.49.
“They’re awesome little kids who actually, you know, did it,” said Sarah. “I think it’s crazy that they raised that much money just bringing in all of their change.”
“It sure was something to see the kids bringing their money in every morning,” said Bridget.
In addition, Northfield eighth grader Braelyn Deeter held a bake sale to benefit the little guy, raising $630.28. The Tuesday convocation gave Deeter a chance to meet Myles as well.
So far, Myles has had no less than six surgeries. In addition to his dialysis catheter, he has a feeding tube, which supplements his diet with additional calories. Currently, the family is waiting to see if Sarah is eligible to donate a kidney to her son. They found a perfect match who was willing to donate but was recently ruled out due to health concerns. Though this was a huge let down for the family, they are staying positive. Regardless of the donor, they’re hoping for a transplant this summer.
Until then, Myles will continue peritoneal dialysis at home every night. Myles has grown fond of his dialysis machine, but Sarah said that doesn’t mean it isn’t painful.
“I’m in support groups, and a lot of people say that it’s very painful, but I don’t think he knows any different,” said Sarah. “The doctors say that he won’t realize how sick he was until he gets the kidney, and he’s going to feel like a different person.”
Myles is about half the size of other children his age. Because he has to keep his medical devices sterile, he can’t swim or take a bath, but to the outside world, he seems like a normal toddler.
“He’s pretty much happy all the time,” said Sarah. “I don’t think he knows he’s sick. He knows that his sister and us, we don’t get hooked up to machines. He knows that he has his machine and he takes a lot of medicines and he goes to the doctor a lot, but I’m not sure how much he understands at this point.”
Though he can’t communicate all of his feelings, he makes some things very clear. He loves superheroes, especially Spiderman, and cats.
“He understands that he wants to keep his tube,” said Bridget. “He’s had that tube since he was two weeks old, so it’s a part of his body as far as he’s concerned. When Sarah has talked to him about getting a new kidney and that he won’t have his tube anymore, he wants to keep his tube.”
“Ya, and he wants to keep getting hooked up to his machine,” Sarah added.
Regardless of how much he likes his machine and tube, Myles desperately needs a new kidney, and if they want it to last, it has to be from a live donor. If they can find him a perfect match, the kidney could last between 30 and 60 years. A kidney from a normal match, like Sarah, could last him 15-20 years.
The money raised by the elementary students will help the family with the tremendous financial burden resulting from Myles’ condition. In addition to medical bills, Myles treatment means many trips to the doctor. When he gets a transplant, the family will spend months in Indianapolis while he recovers, followed by multiple trips per week for check-ups.
The elementary students aren’t the only ones donating to the cause. Myles has a GiveForward.com page that can be found by searching “Myles Bartley.” So far, more than $10,000 has been raised through the site. He also has a bank account that anyone can donate to by mentioning Myles’ name at any Lake City Bank location. Finally, those interested can keep up with Myles’ progress through the “Miles for Myles” Facebook page, which documents his progress.
“We’re just hoping for a summer transplant,” said Bridget. “He’s a good boy.”