Maddie Simone Living her Purpose

LIVING HER PURPOSE MADDIE SIMONE

How working through survivor’s guilt led Maddie to refocus her life and find purpose in helping others

By Alley L. Biniarz Photography by Trevor Booth

When Maddie Simone lost her two brothers to the congenital heart “Manual lymph drainage, amongst other things, treats those defect, they all share, she could not help but wonder, “why not me?” with a condition called Lymphedema. This is when there is damage

Their genetic condition “FTAAD: familial thoracic aortic to your lymphatic system, either born with or acquired through aneurysm and dissection disorder, means they are all prone to aortic post-surgery or cancer treatment.” Maddie says that the lymphatic rupture. Maddie’s older brother initially survived a system functions as a cleansing system, which partial tear, only to lose his life four years later to helps to take away impurities, infections, or broken Duodenal Cancer, a disease related to the genetic tissues through lymphatic fluid. This fluid (clear mutation. Their younger brother died four years fluid that you see when you get a cut) takes away after that, he died instantly of a full aortic rupture. all of the damaged tissue and leaves nutrients for Receiving the genetic testing and finding out that she lived with the same condition, halted Maddie’s If you change encouragement of new cell growth. life. Survivor’s guilt consumed her, leaving her wondering what she brought to this world. The journey through living with fear was a long one, but the way you look at things, “It’s a wonderful system, but damage to it can cause chronic and severe swelling, so I work with your lymphatic system to help encourage then she found hope. “For so long, I was scared that I was next to die. Then, I came across the Dr. Wayne Dyer quote, ‘If the things you look at movement to drain those areas,” Maddie explains that lymphatic drainage involves a light, rhythmical skin-stretching massage onto the skin, and she you change the way you look at things, the things you look at change.’ So, I decided that instead of change. combines this therapy with compression bandages or garments. focusing on ‘I have this condition,’ I focused on: ‘what’s next?’” As of now, there are only two full-time theraWanting to do something in honour of her brothers, Maddie initially thought of her older brother and the care that he needed through his time with cancer. Having completed pists of this kind in the Windsor area and it isn’t enough to keep up with demand. “It’s difficult as a therapist to speak to someone who is in pain and discomfort and school for Massage Therapy, Maddie brainstormed the idea for want to get them started, and then have to tell them that they have bringing her work to those who were too sick to leave home. But to wait three months for treatments,” Maddie says. This is why she’s when the complications of this idea took hold of her, she looked been in talks with the Dr. Vodder school, where Maddie did her own up and asked her brother for a sign. That next morning, she woke schooling, about bringing the first round of training to Windsor in thinking of lymphatic drainage. the Spring/Summer of 2021.

Increasing the number of trained therapists will eventually help alleviate the wait time for patients in the long run, but in the meantime, Maddie empowers those on her waitlist to perform some of the self-care treatments at home. She’ll send video demonstrations, explanatory texts, or anything that will help people through this current waiting period, “I always say, you don’t have to see me forever… I’m just the beginning of your journey.”

Maddie often offers additions to her services such as self-care training, lymph tapping, and video calls because she believes that finances should never be a boundary between someone in pain and their self-care treatment. She also hosts a monthly Support Group followed by a community walk. Once a year in September, Maddie hosts a fundraiser walk to raise money for the Lymphedema Association of Ontario’s Compassion Fund. They’ve raised over $16,000 to date for recipients to use towards treatments not otherwise covered by insurance.

This drive to bring self-care awareness and access has also led Maddie to launch an online store, which is filled with products not offered through clinics, named Angelone Health after her brothers. On this site, folks can find compression garments, dry brushes, and other items which help with circulation, inflammation, and all things self-care for those with lymphedema.

Maddie also uses her site and online platforms as an access point to educate the public on lymphedema. “The biggest misconception is that lymphedema can go away if someone stops eating so much or just takes a water pill. This doesn’t have anything to do with either. Their lymphatic systems aren’t filtering or functioning properly. Celebrities who have come out and shared their stories of having lymphedema has helped in shedding some of those misconceptions.”

Through these endeavors, Maddie lives her purpose of being a local resource for lymphedema every single day. Whether someone is a patient of hers or not, Maddie will go the distance to help them access the resources that they need. She has supported those who have gone years unnoticed, ignored, and untreated, and hasn’t given up until that person has received the treatment they deserve.

Maddie doesn’t just promote self-care work for others, but while living with her own condition, she has to be mindful of her own health too. “I don’t want to put my parents through having to bury another child, and I have small children of my own now, and I have to stay healthy for them.”

Deciding to have children in her 40s, Maddie was already at risk with an advanced maternal age pregnancy. Factoring in the element of her heart condition, she was advised not to increase her thoracic pressure, but she always knew that this was her other purpose. “I knew I was meant to be a mom. And now I’m first on medical record in Canada to not only have one child, but first on record to have two with this condition and survive.”

So, along with working out and eating well, she also meditates and practices gratitude every day for not only finding one purpose in life, but two. She is so grateful every day that she found this talent for helping others, and for her two babies who allowed her to guide and raise their beautiful souls.

You can find more online resources from Maddie on Angelone Health, at Valero Wellness, or Active Body Physical Therapy. All resources are linked through her Instagram: @maddielymphtherapist. D

CHASING INCLUSION

Stephanie Seguin and The Chasing Hazel Foundation

By Alley L. Biniarz Photography by Trevor Booth

Local mom, Stephanie Seguin, thought she had been Punk’d when she found out that she’d been nominated for, and later won, NFL Canada’s Fan of the Year Contest for 2021. It wasn’t until the money showed up in her account that it actually hit her.

Stephanie was nominated by her friend Jen Williams for the work she does with The Chasing Hazel Foundation, an organization rooted in inclusivity, acceptance, and creating a better world for individuals with Down syndrome.

“I was pumped to have the chance to speak to a larger audience about the work we do,” Seguin explains her interview process with NFL Network’s Nate Burleson, which was when they narrowed the nominees down and finally announcing her as the winner. “When they told me that the money was for our work and the emotional labour that goes into it, I didn’t know what to do. Money isn’t the reason we do this,” she adds.

The driving force for Steph and her husband Matt has never been money. The backbone of The Chasing Hazel Foundation has always been the many people who make it possible. It’s their community, and their collective passion for creating a more accepting world, that gets Steph and Matt going in the morning. Their mission has

always been rooted in community – even long before the foundation was established. The spark was lit by a baby named Hazel and spread to a group of people who instantly fell in love with her story.

Chasing Hazel began as a blog that Matt encouraged Steph to start post-partum when their daughter Hazel was born with Down syndrome. They wanted to keep friends and family in the loop with their busy lives, all things Hazel, and the realities of parenthood – especially the realities of raising a child with exceptionalities. “Hazel was already this little magnet. This was when our community started,” Steph says about the blog taking off and suddenly attracting the attention of those outside of their immediate bubble.

Eventually, the blog reached professors of the Early Childhood Education (ECE) program at St. Clair College, who wanted Stephanie to come in and speak to future ECE workers. This was the perfect first step into advocacy for Steph, because she knew the work of inclusivity and acceptance had to stretch beyond their home. She wanted to empower education workers with the resources, wording, and approaches to reflect into their classrooms and to their students.

“This was the ideal audience – future educators – listening to me talk. I thought, Hazel could be in their class one day. Many times, you don’t get the full picture of what a person’s life looks like when they live with a disability,” Steph explains the significance of this opportunity, which was followed by many more, and very quickly turned into speaking in even larger spaces.

“The internet paints such an ugly picture of people with Down syndrome and other disabilities, and I wanted people to see that Hazel does the same things as everyone else, and you’d miss that if you didn’t have a front row seat to her life. She’s a sister, a cousin, a granddaughter; she’s not just a diagnosis.”

Fast forward nine years, Steph and Matt, along with their daughters Hazel and Nola, still focus on community outreach and public speaking in order to help others add value to their own spaces. Though now, as a registered charity, they also raise funds to help fill in the gaps for services, like speech pathology, for those who have outgrown government funding.

When it comes to community outreach, there is always learning to be done, and that goes for Steph and Matt. Being a part of, and more importantly, listening to members in the Down syndrome community, is where they learned to evolve their own advocacy. Steph says that as an able-bodied, neurotypical person, she wanted to know how she could advocate without causing harm to the community, or to her daughter. She learned that she didn’t have to be an expert, she just had to be willing to get uncomfortable, let go of biases, and do the work of re-learning.

“I’ve been uncomfortable, and I don’t always like it, but there’s also always been respect and growth at the end. If we’re always comfortable, there will never be change.”

This is what motivated Steph to look around her own spaces and help make them more inclusive. “We have a responsibility to advocate for more inclusive spaces,” she says, having approached her All-Levels CrossFit gym about expanding the Adaptive Athlete program. This would create the space for those with disabilities to enter the gym community, as well as, the competitive side of CrossFit – and not in a separate division or category or class – but to workout and compete alongside everyone.

“We weren’t after participation medals… no ‘great jobs.’ We wanted to fairly include all individuals within the gym environment,” Steph explains. The addition of the Adaptive Athlete categories for the “CrossFit Open” not only led the opportunity for further advocacy in the CrossFit world, but resulted in one of the girls at their gym, Julia Lane, placing first worldwide in her category, Iesha Ellwood placing 8th, Adam Fase placing 13th, and Jaden Youssef placing 24th on the worldwide leader board.

“It takes a village, and many community partners, to make these things happen. We don’t have to make changes or learn alone,” Steph says. “That’s always the scary part; we open our doors and think that we need to have all of the answers, but there are other people who can help.”

This is one of the main missions of The Chasing Hazel Foundation: to empower others to change their own spaces. Steph couldn’t bear the thought of Hazel – or anyone else – coming into a space like the gym, walking through its doors, and not being welcome. “And that’s what this work is about. We need people to brighten the spaces that they’re in. People need to understand that they have the power to bring up the conversation. We need others to look around and ask who’s missing in their spaces. Which voices are being left out?”

Steph says that a person is always worthy of a space – whether that’s a place in the classroom or a position on the soccer team – and we need to make sure there aren’t obstacles or separateness tied to this invitation. “We need to provide supports and accommodations for people to be as successful as they can be within that space. The goal shouldn’t be about changing people with disabilities or for them to fit in; they’ve adapted and adjusted to our world for too long, it’s time for the rest of us to shift.”

Her advocacy has changed so much throughout the nine years, but the current lesson for Steph is that we need to accept people as they are in the moment that they come. “I don’t look at you as, ‘you’re great, but only because you’ll be a certain way in the end.’ No! You’re welcome here just as you are. You’re enough as you are.”

Steph wants to remind everyone that it’s okay to make mistakes, and it’s okay to say that you spoke too soon while learning, as long as we’re willing to seek out help, break down our personal biases, and then do better next time. Find your local community shakers, educators, and influencers and learn from them. Be sure to listen to a variety of voices, ask for permission to enter a space, and approach with kindness and empathy, always.

To learn more about inclusion, Steph recommends looking to: Shelley Moore and Paula Kluth. D

It takes a village, and many community partners, to make these things happen.

The Drive magazine in partnership with Libro Credit Union is challenging Grade 12 students to write an essay focused on their day-to-day lives. Once a school is selected, the top five articles chosen by the teacher are further reviewed by our editorial team and the winner receives a $500 RESP from Libro Credit Union, along with publication of the essay in our issue. Congratulations to Tatiana Cahur for being our May-June winner! We are proud of all the participants and will continue to support our community through continued literacy and a path to higher education.

THE IMPACT OF YOUTH UNEMPLOYMENT ON CANADIANS

By Tatiana Cahur

There is no doubt that currently, and more than ever before, Canadian youth have been greatly affected by unemployment. This deprives them from learning life-long transferable skills such as communication, problem-solving, and leadership skills which are all critical factors that impact our growing economy. In addition, it deters individuals from interacting within the community, decreases their overall motivation, and many times, their mental health. If these adverse effects from youth unemployment continue, it is safe to assume that our future generations will be left behind. Not only does it affect their financial goals, but it also prevents them from gaining valuable life experience.

In 2020, about 16.7 percent of 15 to 24 year-olds were unemployed in Canada. This average is significantly higher than the previous year. As a part-time cashier since the age of 15, who is actively involved in the community, I can confidently say that being employed has helped me in several different ways. For example, over the course of my employment, I have learned new skills, and I continue to enhance and practice others. These include, but are not limited to: time-management, problem-solving, communication, teamwork, organization, interpersonal, and analytical skills. With that being said, I strongly believe this experience will only prove to help me in the future when I begin working full-time in my chosen profession.

Furthermore, I think that it is crucial and extremely important to start developing important life skills early on and apply them in daily life and community. This is where youth employment is helpful. However, as a result of this pandemic, the youth unemployment rate is now even higher than it was in previous years. Even those that are actively looking for a job are finding that opportunities are scarce. Youth unemployment creates many problems in our society and because of this, young people are feeling defeated and are quickly giving up. They are resorting to distractions such as substance abuse and other destructive behaviour. In particular, mental health issues have escalated to record high levels in young people since the COVID-19 pandemic. Depression, feelings of isolation, and even suicide are on the rise because of youth unemployment. This puts our future health and prosperity as a nation into jeopardy.

Clearly, the fact that youth unemployment is very high in Canada means that it is negatively impacting individuals and in turn, everyone as a whole. They are being left behind at a time when they should be building and contributing to their communities. However, I am hopeful that with proper leadership and support, our current youth unemployment rate will decrease, and we will have more opportunities for this sector. D

Quality. Experience. Style.

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Scott Martindale—3rd Generation

Today, in Ontario, there are over 1,500 people waiting for a lifesaving organ transplant. This is their only treatment option, and every 3 days someone will die because they did not get their transplant in time. But you can help. When you register your consent for organ and tissue donation, you let those waiting know that you would help them if you could. One donor can save up to 8 lives through organ donation and enhance the lives of up to 75 more through the gift of tissue. Len Martindale passed away two years ago and as an organ donor Len’s generous donation of his vital organs saved the lives of seven individuals. Martindale Window and Doors encourages you to visit www.beadonor.ca today.