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Meet Brees Krasniqi!

Life with an Un-Named Rare Disease

America's Credit Union is a proud sponsor of Xtraordinary Joy Inc.

The organization was established in 2016, to raise funds that will promote clinical interventions, therapies and care opportunities for children afflicted by never-before-studied X chromosome deletions.

Meet one of our own, Brees Jordan.  

  • Brees was born with XQ28 chromosome deletion
  • XQ28 deletion is a rare genetic disorder 
  • There are less than 35 kids in 11 countries with this disorder

We support the research and awareness around XQ27 and XQ28 chromosome deletion by partnering with Xtraordinary Joy, Inc.  


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Brees' Story

Our Hero!

Brees was born premature and during his 5-week NICU stay he was diagnosed with a very rare chromosome deletion, XQ28. This deletion is extremely rare with less than 35 kids in 11 countries who have it.  As his family continues to learn more about Brees' diagnosis.  There is one thing they do know, he is strong.

Brees took his first steps in 2021 right before his 4th birthday. He is giving his all to learning how to speak and expanding communication through sign language and pictures. Even though he has to work hard each day to communicate, he does it all with a smile in his face.

Brees has been part of Xtraordinary Joy community since he was 3 months old.  At ACU, Brees is our hero!  Please help support the ACU community by sharing his story with others.  


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About Xtraordinary Joy, Inc.

Fighting the battle of rare genetic disorders

Xtraordinary Joy is a non-profit organization providing advocacy and funding for X-chromosome deletion research for children afflicted by never-before-studied X chromosome deletions.

Scientists from the University of Florida are teaming up with Xtraodinary Joy to examine the effects of gene deletion on biochemical pathways and attempt to rescue brain circuitry with targeted therapies.

A deletion is a type of mutation that involves the loss of any number of nucleotides, from a single nucleotide to an entire piece of a chromosome. from a segment of DNA. 

It is possible to have a disorder within a disorder through this deletion. it is common to see:

  • Hunter Syndrome
  • Fragile X Syndrome

The community is essential to overcoming the trials of a genetic disorder. Whether you are a parent of a child recently diagnosed, or a sponsor interested in learning more about the research, we hope we can provide awareness around the disorder and a resource for you to turn to.  

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