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Be Bella’s Superhero

I am 10 years old who was born with a congenital condition known as Triple X Syndrome, which has compromised my kidney function. I am looking for someone to step up as a living donor.

Will you be my real-life superhero?

My Vlog

About Me and My Condition

I am a small kid with a big heart. I love ponies, Roblox, drawing, and hanging out with my older sisters. One of my dreams is to have a puppy, but my family says I have to wait — which is really hard. 

 

I’m used to doing things that are hard though. I was born with a condition called Triple X Syndrome.

Girls normally have two X chromosomes in all cells — one X chromosome from each parent. In Triple X Syndrome, a girl is born with three X chromosomes. While many with the condition have only mild symptoms, I was unfortunate enough to have it cause chronic kidney disease from the time I was born. 

 

I lived in the hospital for the first three years of my life and have spent months on dialysis. While the past few years have gone fairly smoothly with my condition being managed with medication, my doctors tell me my kidney disease is now rapidly progressing, and I can tell that there’s going to be a lot more hard work in store for me soon.

My kidney function levels are currently at 50% and steadily decreasing, so it’s critical to find an eligible kidney donor while there’s still time.

My Story

Ways to Help

Doctors are strongly recommending I receive a kidney transplant as soon as possible. My parents have been tested but found ineligible to donate their kidneys. Here’s how you can help —

Learn about living donation

By far the biggest miracle we could hope for is someone stepping up to be a living donor. Though donating a kidney is a very tough process, it is also a fairly safe one for healthy individuals.

Check out these resources to learn more about becoming a living donor:

Kidneyregistry.org

Kidney.org

Even if you are not a perfect match for Bella, a kidney exchange programs may be able to help us locate the right kidney to make the trade — saving multiple lives in the process.

Getting registered starts with just a click. 

Share my story on social media

The more we get the word out, the bigger my chances of finding my superhero are. Please share this page, as well as my Instagram and Facebook pages across all your social networks. 

Please also subscribe to both to keep up with updates about me. 

Donate to my advertising fund

We are planning to run ads to help promote this page and give my story wider reach.

 

If you like, you can donate to my advertising fund.

 

Please note, these donations will NOT be used to pay for medical procedures.

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Kidney Donation Facts

  • The typical wait for a kidney donation off the national registry is 3-10 years vs 90 days with a living donor match through the National Kidney Registry (NKR) — one of the reasons we are so desperately searching on our own.

  • Living donors are typically back to their regular activities just 2-4 weeks after surgery.

  • In the unlikely event that a living donor ever needs a kidney, they will be prioritized through the organization we are working with, NKR.

  • Living donors can reside anywhere in the U.S. – all travel and expenses are covered if you are a match.

  • Registering for a screening is not a binding commitment.

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