This Girl’s Incredible Spirit Will Make You Forget She Has Pompe

What would you do if you were told that your six-month-old daughter had a rare genetic disorder and wouldn’t live past a year?

Would you:

A. Cry hysterically

B. Punch the doctor in the face

C. Learn everything you can about the disease

D. Never take “no” for an answer

E. All of the above except B

Okay, while we know there have been times we’ve wanted to punch a doctor in the face, we also know that is usually not the best way to get the kind of care you or your child needs.

Ouch. That's gotta hurt... Source: www.giphy.com
Ouch. That’s gotta hurt… Source: www.giphy.com

For Krystal Hayes, she didn’t let her daughter’s diagnosis of Pompe disease stop her from giving her daughter, Haley, the best life she could.

And she wasn’t taking “no” for an answer.

She got connected with an incredible doctor at Duke Children’s Hospital and hasn’t looked back.

Haley and her doctor are a match made in heaven! Source: www.facebook.com

Now, Haley, who recently celebrated her 10th birthday (yep, you read that right! 10th!!!), got to have her life-long dream come true.

She got to meet Carrie Underwood! Since Haley could talk, she would sing along to Carrie Underwood’s songs.

Quit being so pretty Carrie... Source: www.giphy.com
Quit being so pretty Carrie… Source: www.giphy.com

Anything that offers support and happiness to this little girl is an A+ in our book!

A family friend, local country singer, Brittany Marie, was instrumental in getting Haley the “Meet and Greet” passes to Carrie Underwood’s concert in Hampton, VA.

And Haley’s meeting with her idol was everything she could’ve hoped for. They chatted like old friends, and Carrie Underwood even singled her out during the concert.

What an incredible night for an incredible girl! Source: www.facebook.com

You can read more about Haley’s inspiring journey at Helping Haley.


What amazing moments have you had with Pompe disease? Let us know 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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