Brielle Manning has been fighting through seizures for over a year, but the dust has settled and her family is now seeing some relief.
Brielle suffers from an incredibly rare disease called DUP15q Syndrome. This is a chromosome abnormality condition that happens when an extra copy of chromosome 15 is present in every cell. As a result, it causes a number of severe problems due to the immense duplication. It affects motor skills and causes seizures and speech delays. To learn more, click here.
Brielle suffers from all of these symptoms, as her mother Cortney works diligently toward spreading awareness and finding available treatment. Because not much is known about the disease, there isn’t much closure. Cortney has no definitive answer as to whether her daughter will ever walk or speak properly again.
They noticed unusual patterns when Brielle was only 6 months old. She wasn’t able to hold her head up properly and was missing all of the regular infancy milestones. Then she started having scary infantile spasms, caused by DUP15q. It was a rough time but by now, they’ve been toughened by the experiences.
As stunned as the family was by the diagnosis, they won’t sit back and remain stagnant. The overall experience has only made them more proactive. They have now dedicated their lives toward advocating for the disease and putting their daughter first. The local community has caught on to the advocacy and are now joining in.
“You can get through anything that is set forth before you…if you would ask me that a year ago I might not have thought the same way,” said Cortney in an interview with KWWL News NBC . “I thought our world was coming to a halt and crashing down, I always kept thinking about what Brielle couldn’t do instead of what can she do.”
Cortney has accepted the hard truth that Brielle probably won’t go to college, get married and have an independent life of her own. Right now, it’s a matter of extending her life and making it as comfortable as humanly possible.
Many children have passed away in their sleep because of the rare disease and the seizures that it causes, along with other heart conditions. Raising funds and awareness will help avoid these tragedies in the future.
In the past year, Brielle has made significant progress. She can now hold her head up and stand on her own, which fills her parents with hope.
The Manning family are raising money and awareness at a benefit. If you would like to get involved, click here.
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