Inspired Westland swimmer finds her ‘someone’ to help, plans fund-raiser – Detroit Free Press

Posted: Published on April 20th, 2017

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Joseph Penrod is 14, and has gone from walking, to using a scooter, to needing a motorized wheelchair. He has Duchenne muscular dystrophy, which is stealing his mobility. Eventually, the disease will take his life. Detroit Free Press

Livonia Community Swim Club swimmer Caitlin Jodway, 16, of Livonia Franklin High School poses for a photo with Joseph Penrod, 14, at the Livonia Recreation Center in Livonia on Wednesday April 19, 2016.(Photo: Ryan Garza, Detroit Free Press)Buy Photo

Caitlin Jodway's muscles flex and relax, flex and relax in a steady rhythm as herlimbs slicethe water.

She glides through the pool, putting those sinewy arms and legs to work to help a boy whose own muscles are failing.

That boy is Joseph Penrod. He is 14, and has gone from walking, to using a scooter, to needing a motorized wheelchair.He has Duchenne muscular dystrophy, whichis stealing his mobility. Eventually, the disease willtake his life.

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But in the time he has here on this earth, Joseph wants to be able to do the things other kids his age do, like go to the movies and hang out at the mall with his friends from Walnut Creek Middle School in West BloomfieldTownship, where heis an eighth-grader. But it's getting harder for him to get there. His family doesn't have a customized van that can accommodate his motorized wheelchair.

His mom, Marissa Penrod, has to lift his nearly 100-pound body in and out of their car, which can carry his scooter, but not his motorized chair. It's getting more and more difficult as Joseph grows and his Duchenne progresses.

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When Caitlin, a 16-year-old junior at Franklin High School in Livonia, heard Joseph'sstory in September, she was driven to do something to help.

We cant help everyone, but everyone canhelp someone," Caitlin said, quoting the late President Ronald Reagan. It's one of many inspirational quotes she put on awall ofher bedroom in Westland when she was in middle school, but she said, "This one has always stood out to me."

Livonia Community Swim Club swimmer Caitlin Jodway, 16, swims during practice at the Livonia Community Recreation Center in Livonia on Wednesday April 19, 2016.(Photo: Ryan Garza, Detroit Free Press)

She had the phraseprinted on the T-shirts for the upcoming Wheels for Joseph Swimathonshe's planned forSaturday in Livonia, where she's a member of the Livonia Community Swim Club.

On her own, Caitlin organized the fund-raiser expected to draw as many as 200 swimmers who've eachcollected pledges to support Joseph and his family in their quest to buy a vehicle that can accommodate his motorized wheelchair.

They need about $60,000 to buy a customized Chrysler Pacifica to suit Joseph's needs, and though Caitlin doesn't think she'll be able to come up with that much money during the swimathon, she hopes to at least collect $10,000 toward the goal.

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"Its very cool that people my age are helping out," Joseph said, adding thathe hopes he might be able to learn to drive the Pacifica.

"I think it'd be cool to be able to do that," Joseph said. "I like the style of the Pacifica, and its got a lot of room in it. Theres an electric ramp that just comes out of it on one of the side doors. ... They make it now so that the entire front seat comes out and I could just drive my chair right into where the steering wheel is."

Marissa Penrod said she was blown away when Caitlin approached her about hosting the swimathon.

"Whats incredible about this is that we hear so much about the youth of today and their sense of entitlement or, you know, their lack of motivation," said Marissa Penrod."I think when you see someone like Caitlin, it helps all of us realize that there truly is great hope for the future. To see a young girl like this throwing herself into a cause to support one of her peers not because she has to, but simply because she can and she wants to, its incredibly inspiring to me and to a lot of other people."

Dozens of businesses in Livonia and Plymouth have donated food, water, Gatorade, swim caps and gift cards for raffles and giveaways at the event.

"I knew I could put forth something, so I decided to do this event to help Joseph and his family," Caitlin said. "Everyone has the ability to do something whether its small, or big like this, we all can do something."

Joseph's family founded a nonprofit organization in his name called Team Joseph, which raises money for research of Duchenne muscular dystrophy, after he was diagnosed 9 years ago. The Penrodshave raised millions of dollars for research over the years, but not a penny of that money can be used to meet their own needs.

"I realized how muchJoseph and hisfamily do for Team Joseph and for other boys with Duchenne's, andI knew that I couldnt just sit here," said Caitlin, who's been swimming since before she could walk."I could do something. Alot of people think, what can swimmers do? Runners can have a 5K to raise money. For golf, they can have a golf outing. But what can swimmers do?

"So I thought, I could host a swimathon and that would raise money and that would help him."

She contacted the USA Swimming organization about planninga swimathon, met with her coach and the Livonia Community Swim Club board seekingsupport, and quickly found allies.

"The beautiful thing about Caitlin is she doesnt see any reason why people would say no to her," Marissa Penrod said."Shes motivated, shes fearless and she is on a mission. Shes very inspiring."

Caitlin's mother, Jenifer Jodway, drove her daughter to the first round of businesses she approached to support the swimathon.

"I remember the first donation she got to make the day go off without a hitch, it was seven-dozen doughnuts fromThe Looney Bakerin Livonia.She came out, and she said, Mom! Mom! Theyre giving me donuts! Swimmers love food.

"Then it turnedinto 18 pizzas, 300 bottles of water and about 300 bottles of Gatorade. And so manygift cards for raffle prizes.

"I feel sorry for anybody that tells her no. I see her being successful. I dont see her quitting very easily at anything."

Her friend, Lily Griffiths, 17, of Plymouth joined Caitlin in trying to find support from area businesses.

"Me and Caitlin went around to different restaurants and places, asking for gift cards to reward our swimmers that raised the most money," Lily said."We gave each of our swimmers a packet, and they could either ask for donations or get pledges for so much money depending on how many laps they swim.

When Caitlin told Lily about what she wanted to do, "I was so proud of her that she was doing it, and I was so honored that she asked me to help her," she said.

Jenifer Jodway said she's been pleasantly surprised to see the daughter she described as dynamic organize such a big event.

"There was some guidance on my part, but literally all the muscle has been her. We were born and raised Catholic, and thats how we raised our kids too. Of course, service is such a big part of what you hope they walk away from the experience with. Somehow, some way, it stuck for her. Weve just been supporting her along the way."

Caitlinand Joseph are friends now, sending one another snaps on Snapchat.

"Shes very nice and shes funny," Joseph said. "The pictures she sends, they are like random, funny things."

And Caitlin said she's glad to have made a new pal, too.

"Hes going to stop by during the event and meet everyone," she said. "Hes just so thankful foreverything. Hes been really supportive on his end. Im glad this is all coming together and itll be fun to see what happens this weekend."

Contact Kristen Jordan Shamus: 313-222-5997 or kshamus@freepress.com. Follow her on Twitter @kristenshamus.

How to help

You can donate to theGoFundMe account Caitlin and her family have set up to help Joseph Penrod and hisfamily buy a customized van that can accommodate hismotorized wheelchair at https://www.gofundme.com/wheels-for-joseph-penrod.

You can also attend Saturday's swimathon, and cheer for the swimmers. The event runs 10 a.m.-4 p.m. at Franklin High School's pool, 31000 Joy Road, Livonia.

What is Duchenne muscular dystrophy?

Duchenne muscular dystrophyis aninherited genetic disorder most commonly affectingin boys. It is oftendiagnosed between ages 2 and 6, and leads to muscle deterioration and weakness. Symptoms usually begin in childhood and progress; children often lose the ability to walk by the time they're teenagers. It also affectsthe heart and respiratory muscles. Advances in cardiac and respiratory carehave allowed people with Duchenne muscular dystrophy to live longer lives.Many are surviving into their 30s, and some have lived beyond that. It affects roughly 1 in every 3,500 boys worldwide.

What is Team Joseph?

Marissa Penrod, Joseph's mother foundedTeam Joseph, a 501c3 nonprofit, which uses its money for one mission: to fund medical research to finda treatment or a cure for Duchenne muscular dystrophy, the genetic disorder that affects Joseph.

Team Josephhas raised millions of dollars for research, and Marissa Penrod said that for the first time, a drug has been approved for use by the FDA as an effectivetreatment in slowing the progression of Duchenne.

"We were big advocates in that push, in that effort," Penrod said. "It was the first treatment approved for Duchenne. While its fortunate that we have the first one,it will only help 13% of patients with Duchenne, and unfortunately Joseph is not in that 13%

"So were proud, but were not satisfied."

And so the efforts to raise money for research continues. Team Joseph hosted a huge fund-raiser in March calledJammin' for Josephat the Fillmore in Detroit that featured the Eli Young Band. And in September, it'll host a fund-raising golf outing, Penrod said. For more information about Team Joseph, go to http://www.teamjoseph.org.

Editor's note:A previous version of this story misstated the location of Walnut Creek Middle School. The school is located in West Bloomfield Township and is part of the Walled Lake Consolidated School District. This story has been corrected.

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