Why I Run: Pittsfield Woman Raising Money For Rare Genetic Disorder
PITTSFIELD, Mass. — When Meaghan Rogers wakes up in the morning she has to take 20 pills. Then 20 more at lunch. And 20 more at dinner.
She's on a strict diet, has to purchase specific foods, and has to drive to Albany, N.Y., to consult with doctors every couple of months. The Pittsfield resident was born with the rare genetic condition phenylketonuria, known more commonly as PKU, in which the body cannot metabolize proteins.
"PKU has a lot of serious side effects if it is left untreated. Epilepsy is a big one, ADHD is a big one, microcephaly, severe developmental delays. Even if you stop treatment as an adult all of those things are still at risk of happening," Rogers said.
Her husband's employer changed health insurance companies last year and she was told her medicine wouldn't be covered. She spent four months auguring with the insurance company and even asked for help from U.S. Sen. Elizabeth Warren's office. A month supply costs $1,500 and during those months, Rogers had to do whatever she could to get by until the insurance finally kicked back in.
"I was going off of samples. I was taking a different medication for it that my doctor had in the office," Rogers said.
But most people wouldn't know that when they see her out running on the city streets. They wouldn't know about how she was teased growing up because of it. They wouldn't know that at one point she became so frail that even today she looks at the photos from that time and cringes.
"I actually saw a picture of myself on Facebook Time Hop from when I was in college. I was really tiny. I weighed 118 pounds. I realized that looking at that picture, looking back at it, I hated the way I looked. I hated my body. I hated everything about it," Rogers said.
To anyone who sees her running, she's just another jogger getting a workout in. They wouldn't know that she's out there running for everybody else who has faced similar struggles with PKU — the families who don't have insurance, those who can't afford the special food to stay on their diet, and those who struggle to get to doctor's appointments.
She's running for the non-profit organization PKU Helping Hands, which reached out to her when she had no insurance coverage to make sure she had everything she needed to manage the condition. In May, she is tackling the Long Island Half Marathon, her first race of such distance, and is using it as a springboard to raise money to give back to the Albany-based non-profit.
"They do a lot of great things about educating people about PKU and just helping families who really need it to stay healthy, visit doctors, and afford medical foods in addition to the medication," Rogers said.
It isn't just the medication families struggle with, but the strict diet. Rogers says a single bag of protein-free pasta can cost $13 and PKU Helping Hands will provide food and money to help keep struggling families on track with that, too.
"That in addition to the medicine, PKU can be really costly to stay on your diet. That's why a lot of people tend to fall off once they get out of their parent's care," Rogers said.
The 28-year-old first got introduced to PKU Helping Hands about a year and a half ago when she donated some food she had for a gala fundraiser the organization was hosting. Rogers became friends with the organization's President Christina Burniche over the following months and throughout her struggle with the insurance company.
Only about 1 in 15,000 infants are born with PKU and Rogers has been joining Facebook groups to network and share advice with other families.
"You have to be born with it. You can't just develop it over time. But it is a lifelong disorder so it has to be managed throughout the child's lifetime and the person's lifetime. It gets to be difficult because there aren't a lot of doctors who specialize in PKU," Rogers said.
Last fall, her cousin ran a half marathon. A few months later, Rogers saw the photos of herself she didn't like and set her mind on running one.
"I've gone through a lot not just through PKU but I've had heart surgery, pelvic surgery. I want to do something that is for myself that proves to myself. My body was made to move and it has gone through a lot and it is still here. So I'm going to set this goal and do it. I am going to show myself that I can do it. I'm not going to give up on myself," she said.
She found a half marathon back in her hometown, far enough away where she won't run into many people she knows but also on familiar territory.
"I wanted something that was going to be me against myself. It was going to be me, my mind, and 13.1 miles. That's all I got. That's why I went with the Long Island Half Marathon," Rogers said.
While accomplishing this goal is a big deal for Rogers, she also wants to give back. She set up a fundraising page on YouCaring.com and is directing any money raised back to PKU Helping Hands.
"I set a target goal of, hopefully, $5,000. I don't know if that is actually going to happen but any dollar I get is money that wouldn't have gone to PKU Helping Hands anyway. $5,000 is the equivalent of the number of months I went without my medicine last year," Rogers said.
Of course, with PKU the training gets more complicated. The increased exercise impacts the diet, so throughout the process has not only had to get in physical shape but repeatedly consult with dietitians to make sure she is eating right for the increased workload.
"I found it was really hard to make sure I was getting enough calories in with running and having the limited diet," Rogers said.
"Our diet tends to be very carb heavy. There are fruits and vegetables we can have, which are the main staples of protein for our diet. That, I would say is the hardest thing, is making sure I get enough protein. The catch 22 with PKU is that when a person doesn't get enough protein, their body starts breaking itself down to get that. That still happens with people with PKU and it is a problem because we are getting an uncontrolled amount."
But it is the type of challenge she was looking for when she set the goal.
"I never dedicated myself to running and I never thought it would be possible to run more than three miles," Rogers said. "I knew it was going to be a challenge to myself and I didn't want to do something that was easy or familiar. I just got the idea and went with it."
On May 7, she will head to the starting line. She won't win the race; she'll probably finish somewhere in the middle of the pack and be given a finisher medal.
But for Rogers, that medal represents a whole lot more than just 13.1 miles.
Tags: disease, fundraising, half marathon, health & wellness,
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