How To Be A Princess And Inform Your Subjects About PH

When you have pulmonary hypertension (PH), sometimes the idea of just walking up stairs can be daunting.

Kayleigh Johnson, who has been living with pulmonary arterial hypertension (PAH) for years, is going to be doing just that.

At 10 years old, Kayleigh led the 2016 Southwest Louisiana Mardi Gras Children’s Day parade as the grand marshal on Feb. 7 in Lake Charles, LA! She used this great honor to bring more awareness to PH and even invited other children living with the disease to join her on the float.


Leading a parade, raising awareness, and sharing her day with other children like her? Sounds like Kayleigh has a true generous heart and spirit, and we can’t help but be so proud of her!

Kayleigh wants to show the world that she can do a lot of things other children can, even though she lives with PH.

Whether it’s dancing, reading, or spending time with her friends, Kayleigh doesn’t let PH stand in the way of living her life!

Get it, girl! Source:
Get it, girl! Source:

And even more incredible? She does it all with a smile!

I don't know if I've ever seen Kanye so happy... Source:
Like this one right here… Source:

Her efforts to raise awareness for pulmonary hypertension have helped the Pulmonary Hypertension Association (PHA) with their Heart2CurePH campaign.

With no long-term treatment for children diagnosed with PH, more treatments, or better yet, a cure, are a necessity.

As princess for the day in the Mardi Gras parade, Kayleigh’s very first decree is that everyone learn more about pulmonary hypertension. Let’s get started!


What do you think about children with rare diseases spreading awareness? How much of a difference do you think it will make? Share your thoughts in a comment below! 

Farrah Fontaine

Farrah Fontaine

As a child, Farrah Fontaine always knew she wasn't normal. Part of her family descends from the ancient Silk Road, which made her stand out in the Great White North. That's why she wants to give voice to the voiceless so they know they're not alone.

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