Tight Lines for Tillie: Risers 4 Rett

A little girl named Tillie.

When Tillie Tinsley was born, she was hitting every milestone. Growing, learning, lighting up every room. And then something shifted.

Around the time she turned one, her parents, Frances & Ben, started noticing things. She was losing control of her hands. Words she had started to form began to disappear. Her body would go rigid and stiff in a way that terrified her. She wasn't sleeping. She was screaming, not out of frustration, but out of what could only be described as terror, as if something inside her body was happening that she couldn't understand and couldn't stop.

Frances & Ben knew something was wrong. But getting anyone to believe them was its own nightmare. Specialists told them Tillie was probably fine. After months of evaluations and relentless persistence, they finally got a genetic test. The results confirmed what their instincts had been telling them all along: Tillie had a mutation on the MECP2 gene, the key genetic marker of Rett Syndrome.

Rett Syndrome is a rare neurological disorder that primarily affects girls. It develops after a period of normal early growth and causes regression in skills, including loss of speech, hand function, and mobility, accompanied by seizures, breathing irregularities, anxiety, and sleep disturbances. There is currently no cure.

Tillie is 7 now, a second grader with physical therapy, occupational therapy, speech therapy, and more hospital visits in her short life than any child should have to log. She handles all of it with a grace that humbles her family. She is mellow and sweet and she is the beating heart of the Tinsley home. Spend a little time with her and she will connect with you at a soul level.

She deserves everything her family and community can give her.

The clinic that changed everything.

Most of the medical world isn't built for a child with Rett Syndrome. The symptoms touch nearly every system in the body and navigating it alone, bouncing between specialists who don't talk to each other, is exhausting and heartbreaking.

That's what makes the Rocky Mountain Rett Clinic so extraordinary. Founded in 2011 by Dr. Tim Benke, a neurologist and researcher at Children's Hospital Colorado who has dedicated his career to curing Rett Syndrome, the clinic brings up to 15 sub-specialty providers to the patient on each clinic day. All in one place, all focused on Rett.

Frances & Ben will never forget the first time his family met Dr. Benke. He walked into the room and before saying a word to the adults, he turned to Tillie. He talked to her directly and looked at her like she was the most important person in the world. Because to him, she was. In a journey full of rooms where Tillie was talked about but rarely talked to, that moment meant everything. That's the standard Dr. Benke sets for every person who walks through those doors: a patient first, a person first.

Families travel from across the region because there is nothing else like it. The clinic is also at the forefront of clinical trials and research with a real shot at a cure. They gave the Tinsley family something they had nearly lost: hope.

Four friends. One river. One mission.

Ben Tinsley, Brett Turner, Ryan Saunders, and Jennings Tinsley have been friends since high school. Their lives have taken them in different directions, and the four of them haven't been in the same place at the same time in over a decade. This April, they're changing that through Risers 4 Rett.

Risers 4 Rett is one of the Rocky Mountain Rett Association's annual fundraising campaigns, where participants take on a personal challenge and rally their communities to donate to the clinic. This year, the team is heading to Almont, Colorado, tucked between Crested Butte and Gunnison, to wade into the Taylor River and fish for brown and rainbow trout over a four day weekend. It's April in Colorado, so it could be a blizzard or a t-shirt day. Probably both.

Two years ago, Ben did this with one teammate and together they raised $22,000. This time, the goal is $40,000.

Where does the money go?

Every dollar goes directly to the Rocky Mountain Rett Association, which funds the Rett Clinic's full-time staff, clinic space, and expanded operating days. More clinic days mean shorter waitlists. Shorter waitlists mean families get answers sooner.

Donate before April 22nd. Share it with someone who might care. And follow along as four lifelong friends wade into the Taylor River, for Tillie and every child like her.