Finding Reasons to Be Grateful to My Scimitar Syndrome

The opportunities are endless with my chronic illness.

My not-so-average body is actually my greatest gift. Think about that – someone’s imperfections can somehow help them in life and make them appreciate things that little bit more. The strength I have, some of the friendships I have made and my passion have all come from this wonderful opportunity I have been given: to look at life from a different perspective and teach others about what I can see through the eyes of my illness.

three friends in matching maroon shirts smiling backstage during a film shoot
Katy shooting her film with friends

Instead of sitting down feeling sorry for myself and dwelling on my chronic illness (Scimitar syndrome – a rare congenital heart defect), I have really pushed my limits and stretched myself so I can get as much out of life as possible. I have fundraised for a hospital’s charity, I have made a film with the charity Fixers to show that illness should not stop you from achieving and I have been part of a couple of campaigns. So thank you, Scimitar syndrome, because without you, I would not think of doing this. I would not be aware of how much funding hospitals need to get the best equipment to treat their patients. I might not have been aware of how young people need support when transitioning from pediatric to adult hospital services and I might not have known how much people can take life for granted.

I don’t want people feel sorry for me. I want people to allow me to tell my story – to educate and teach them about the side of illness they don’t know about. How illness should not mean you cannot be part of society and how illness does not define who you are, because if you want to achieve and do things you enjoy, stay determined, grab every opportunity and you’ll go far.

So thank you, Scimitar syndrome, because I cannot wait to see what happens next in my journey. You have made me passionate about helping others and spreading my positive message.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Congenital Heart Defect/Disease

baby crying with a congenital heart defect

What Your Child With Congenital Heart Disease Wants You to Know

Dear Parents, I tell you this with all the faith in the world: you will get through your toughest days, because I have lived it. Despite having focal seizures from an active brain bleed, I had my first surgery at 54-hours-old because my heart couldn’t wait any longer. After my first surgery, I had a [...]
man watching sunrise on mountaintop

Why I Made the Conscious Decision to Be Totally Honest About My Chronic Illness

A doctor recently described me as an “enigma.” I think he meant it as an endearing comment, but I took it as a compliment regardless. I was born with congenital heart disease. My heart has a number of defects that are rare and very complex to treat. From a young age I lived with the [...]
Image saying "there is no cure" and other facts about CHD in a heart shape

Why We Won't Stop Raising Awareness for Congenital Heart Defects

I often think of all those living with congenital heart defects (CHD) whose scars are beneath their shirts and stories behind their fears. But maybe the most disturbing yet motivating aspect is that most people are not even aware that CHD is the number one birth defect in the U.S. It impacts approximately one in 100 live [...]
Mia and her husband visiting their daughter in the Cardiac Intensive Care Unit when she was a day old.

To the Parents Who Just Found Out Their Baby Has a Congenital Heart Defect

Dear Friend, I don’t know you, yet I consider you my friend. You have just gained membership to one of the clubs that no one really wants to belong to. I am a member, too. Our babies were born with congenital heart defects (CHD). I know you are scared, friend. I know all too well. [...]