@kyleniego
There is no greater love than that between a mother and her child. That love is fierce and the bond unbreakable. From the moment that little life takes its first breath, a mom’s desire to nurture and protect is astounding.
However, when you become a mom to a child with a hereditary disease that affects your lungs and digestive system and also threatens your life, you become more than a mom with an unbreakable bond, you become a warrior queen and you gear up for the fight of your life: the fight for your kid’s life.
Kellene O’Connell is a mother of two, devoted wife, my best friend, and an absolute badass. She is also the most selfless and generous person I have ever known. Kellene became a mom to her son, Brady, on March 13, 2009 and, little did she know, the trajectory of her life would forever be changed.
Hours after Brady was born, he was operated on to address a blockage caused by meconium ileus due to complications from Cystic Fibrosis. He and his parents spent the next 33 days in the NICU where he fought for his life. Since birth, Brady has had countless stays in the hospital. He takes almost 50 pills a day, has a feeding tube and just completed a clinical drug trial that they hope shows promising results. But there is still a lot of work to do and Kellene has decided to lead the charge.
For a decade now, she has taken matters into her own hands and the CF community is lucky to have her in their corner. Over the past six years, Kellene has raised over $1 million for the Cystic Fibrosis Foundation. She is one of the most active participants in the CF community.
Her unwavering devotion to this cause has brought her to clinical trial labs and Capitol Hill. On top of all of her lobbying and advocating efforts, she holds a massive fundraiser called Shamrockin’ For a Cure. This year’s event boasts a premier silent auction, two bands (one of those bands is mine!) and food and drinks aplenty. What started as a grassroots fundraiser in little bars around town has grown into one of the biggest and best events of the year.
We are so happy to call this lady a friend and the CF community is lucky to have her advocating for them all. Without further ado, meet my best friend and the general in the war against Cystic Fibrosis, Kellene O’Connell.
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TSP: Kel, we are inspired by you and your dedication to finding a cure for Cystic Fibrosis. I know that this event is an immense amount of responsibility on top of being a mom to two boys, one of which requires a ton of attention. Why do you do it?
Kellene: WE NEED A CURE. PERIOD. I see too many adults living with CF that are on the transplant list for new lungs or cannot work because their health is not the best. I want Brady to be able to grow up, go to college, have a career, get married, have kids and I want him to experience all of the things I got to experience. Matt, Quinn, and I need him. Who else is going to make us laugh and go crazy at the same time?
TSP: What is the most challenging part about putting on Shamrockin’ for A Cure?
Kellene: Changing it up every year! Keeping it fresh and an event that everyone wants to attend! When Matt and I decided to start Shamrockin’ for a Cure we wanted a community event that was affordable and fun for everyone.
TSP: How do you move past any fears or challenges you encounter while preparing for this massive event?
Kellene: Brady…and the need to raise funds so we can cure CF is really what keeps me going, but we also have the best committee around which also calms me down. I freak out basically the week of the event until about 9:30PM the night of the event. Then….I am super calm. HA!
TSP: Who are your biggest supporters?
Kellene: My parents. It has to be hard for them because, not only do they have a grandchild with a life-threatening illness, they have a daughter that is dealing with a sick son. I call them 10 times a day with different ideas about Shamrockin’ or if I am scared about the upcoming hospital stay. I cry, laugh, scream to them…and they take it all.
And…I must say my husband Matt is the only person who can truly keep me in line and keep our spirits POSITIVE, always. I swear that guy does not have a bad day…EVER. He is our rock and Brady, Quinn, and I are very lucky.
TSP: If you could share one bit of advice to any parent out there with a sick child, what would it be?
Kellene: Be your child’s advocate. Before I had children, I never believed in “motherly instincts” but, let me tell you, they are so true!! During Brady’s life, I have been a strong advocate for his health and what I thought was right.
TSP: If you have learned one thing since your CF journey began, what would that lesson be?
Kellene: That I am extremely fortunate to have such amazing friends and family members who support us in so many ways – they continue to help us year after year and we are extremely fortunate!
TSP: Ok, let’s talk style and fashion. What is your go-to style/outfit?
Kellene: I cheat. I must admit. I am a big Trendsend, Stitch Fix kind of girl. I am very good friends with the UPS and FedEx workers. They make a lot of deliveries! Who wants to be my stylist?
TSP: If you could have coffee or an adult beverage with any woman, who would it be?
Kellene: A dirty Martini with Jennifer Aniston. I must do this before I die. I know she drinks margaritas so I can change the drink if she wants! If I could have two…it would be John Mellencamp. I will take his daughter Teddi Mellencamp if he is busy.
TSP: When you are not being a total badass, how do you get hygge with it?
Kellene: I love movie night with the kids and Matt. It doesn’t happen often but when it does…I love it so much. Never want it to end or the kids to grow up. When they grow up it will just be Matt and me on the couch watching TV wishing we were all cuddled on the couch together.
TSP: What message of inspiration do you have for any women out there who are looking to move forward with a dream of theirs, but just need a little more push?
Kellene: Read the book….”Girl Wash Your Face” by Rachel Hollis. Life-changing for me. If you fall on your face, you pick yourself up again and, guess what, you are stronger from it! Remember, you ALWAYS learn from your mistakes. So just go for it ALREADY! The world is waiting for you.
TSP: What feeds your soul? Yes, you can say organizing closets.
Kellene: A CLEAN ORGANIZED HOUSE. I am a freak. When I get stressed out I purge my closets. To the point, there is probably nothing left. My kids and husband make fun of me all of the time because they will go and look for something and it will already be off to Goodwill. Oops!
TSP: Which is one of your must-have beauty products?
Kellene: TEN FRIENDS BLOW OUT BAR. I am quite obsessed. I have a problem..I love that place so much. Who does not like a good blowout for your hair?
TSP: Tell us one thing people may not know about you.
Kellene: I feel really passionate about helping others. I truly believe a CURE is coming for Cystic Fibrosis. I am so eager to get a cure because I want to start to help to fundraise for another disease. I want another family to feel what it feels like to have your child get better. We have seen the dark side of this disease and we have seen things get better over time as new drugs come out. I WANT other families to see that light at the end of the tunnel. I do. It is inspiring to me. I always say “let’s cure this thing and get on to the next disease.” They need our wonderful army of people ready to help.
TSP: Where can people find you to learn more about your event Shamrocking For A Cure? Social Media?
Facebook: @KickCFsButt
Instagram: @kickcfsbutt_teamoc
Twitter: @teamoc_cureCF
Such an inspiration!