I was thinking about why role models matter the other day. About the influence of mentors in the lives of kids and teens living with chronic illnesses. Let’s consider the definition of a role model: “a person whose behavior, example, or success is or can be emulated by others, especially by young people.”
Behavior. Example. Success.
Role models are powerful because they’re inspirational. Kids and teens who are sick need people they can relate to; people who've walked a mile in their shoes. Serving as an example to inspire children to live meaningful lives despite their conditions.
Here are seven young ostomates who are outstanding role models for kids.
1. Shelby Hansen, 20
Shelby was diagnosed with Crohn's disease when she was nine. For nearly a decade she lived with chronic pain and endured numerous medical treatments. Ultimately, she had ileostomy surgery in 2011 when the disease progressed and medicine stopped working. While a new ostomate, Shelby had a passion to help others by talking to nurses and patients about her own experience. She has compassion for others because she knows what suffering feels like. A firm believer in the importance of a good support system, Shelby believes that the people who love you will be with you through the good and bad.
“I have an ostomy and am not ashamed of it because I got my life back. My life will never be the same as before, but I know God has used my faith in Him to help other people.” – Shelby Hansen
2. Caitlin Skeens, 29
Caitlin lives with ulcerative colitis and a permanent ileostomy and has had many complications and undergone numerous surgeries as a result of the disease. Overcoming many issues – including bowel obstructions, gallstones, and abscesses – taught Caitlin to advocate for her own health. She's learned to listen to her body and ask for help. As an advocate for ostomy awareness and chronic illness, Caitlin attends support groups to speak publicly about her experience and encourage others to donate ostomy supplies. She draws inspiration from others living confidently with an ostomy and wants young people to know that it’s okay to be frustrated and scared — they are not alone.
“I've faced many challenges, from leaks in public to telling friends or significant other about my condition. It sounds crazy, but practicing helped me in those situations. The more I learned how to change my ostomy in public, the better I got, and the less frustrated I became. The more people I told about my ostomy, the easier it got. Fear is always there but it gets easier to face the more you do it.” – Caitlin Skeens
3. Nicole Mangiaracina, 26
Nicole is a nurse who was diagnosed with Ehlers-Danlos Syndrome at a young age. As a result of EDS, she developed severe colonic dysmotility and now has a permanent ileostomy. She gives back to the ostomy community by volunteering at Youth Rally, a camp for kids with bowel and bladder conditions. She credits Youth Rally for fostering her passion to help others with chronic illness. A strong believer of volunteering, Nicole is a camp counselor helping kids care for their ostomy and gain independence. She also makes YouTube videos documenting her experiences to reassure others that having an ostomy does not stop you from achieving your dreams.
“It's inspirational to know that there are other people out there my age, and even younger, that have ostomies and lead successful lives.” – Nicole Mangiarancina
4. Chloe Moody, 20
Chloe definitely understands what it feels like to live with chronic illness. She was diagnosed with necrotizing enterocolitis at birth and has had a colostomy her entire life. Also having short bowel syndrome causes chronic fatigue, so it requires her to be attentive to nutrition and hydration. Being strong is extremely hard on days when NEG is getting the best of her, but she continues to support others by sharing her knowledge and experience on social media. Chloe also volunteers at her local UOAA chapter support group and cites the ostomy community for sparking her passion for advocacy. She wants other young ostomates who are struggling to know that even though they may live with extra challenges, they have the power to be independent, successful, and live a full life.
“Something that inspires me about the ostomy community is the way we help each other through sharing our experiences. Learning everyone's story is so inspiring to me. Meeting people who have gone through so much and who share their wisdom is priceless, so I try to do it as well.” – Chloe Moody
5. Cody Mitchem, 22
Cody has Crohn’s disease and does not hide it, instead, he's willingly educating people about inflammatory bowel disease because he believes that the best way to erase the stigma surrounding chronic illnesses and ostomies is to talk openly about it. After attending Youth Rally as a camper himself from ages 11-17, he's now a camp counselor helping to inspire kids and young teens. Cody has an optimistic perspective on life, and he's honest about his struggles. He believes that having a good support system is crucial to adjusting to life with an ostomy.
“A good support system consists of friends and family who understand your ostomy and treat you the same, but know when to help you a little more. They tell you that you can do anything you want but know when to check in with you about things you can and can’t do.” – Cody Mitchem
6. Austin Vickery, 19
Austin was born with VATER syndrome and as a result of this condition, he has a Malone ostomy. Being a teenager, he understands the frustrations that come with having an ostomy and illness but he chooses to support others by sharing his story on Facebook. A regular Youth Rally attendee, Austin is always encouraging others campers and considers YR his second family. He also attends ostomy support groups to support ostomates who are hesitant and scared to have the surgery. Austin recognizes that the choice to have ostomy surgery is difficult and everyone deals with the acceptance differently. He wants ostomates and their loved ones to know that they are not alone in their struggles and believes that patience, kindness, and empathy can go a long way.
“I think people should know that all of us didn't choose to have this and we are forced to deal with it and we all deal in different ways.” – Austin Vickery
7. Jakob Kehr, 21
Jakob was diagnosed with ulcerative colitis as a teenager and has a permanent ileostomy. He is grateful for the surgery that gave him his life back because now he can pursue his dream of becoming a professional pilot. Jakob says that being thrown into a challenging medical condition at such a young age has helped him learn important life lessons. Not letting his illness or ostomy hold him back, Jakob attends college, volunteers at Youth Rally, and is a patient advocate at local WOCN conferences. He's currently in the process of starting his own fundraising program for chronic conditions to support others who are struggling with their illness to achieve their goals and dreams.
“Everyone has a unique purpose and contribution to the world.” – Jakob Kehr
The message these young ostomates send is loud and clear — anyone can make a difference in the world and pursue their dreams regardless of the challenges they face.