Mother spreads awareness for rare disease - KWWL - Eastern Iowa Breaking News, Weather, Closings

Mother spreads awareness for rare disease

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WAVERLY (KWWL) -

After suffering seizures for a year a family is relieved their baby is now seizure free. Brielle Manning was diagnosed with DUP15q last year.

DUP15q Syndrome results from the duplication of the 15th chromosome. 

The rare disease affects motor skills and causes seizures and speech delays. Baby Brielle suffers from all these symptoms, but her mother is working to spread awareness, hoping to eventually find treatment.

"Right now she isn't able to walk and she doesn't speak, but we are hopeful she will," said Cortney Manning, Waverly. "As of right now we don't know if she will or not."

When Brielle was 6 months old her parents noticed she wasn't hitting the normal milestones and dropping her head, she was soon diagnosed with infantile spasms. Her parents say those spasms were being caused by DUP15q.

"In the beginning it was a lot tougher definitely dealing with it through the year we've come out stronger," said Manning.

Brielle's parents were shocked by their daughter's diagnosis, but they are not letting it hold them back.

"You realize you just have to and you don't have anything else but to advocate and be there for your child and depend on people when you need it," said manning.

The community has started to rally behind this family and Brielle and that means a lot to the Manning's.

"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 Manning. "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."

Brielle may have some challenges ahead of her, but her parents are hopeful for her future.

"She won't have a 'normal life' where she has college and marries and lives on her own, it's probably not something we are looking for for her, but we do expect big things from her even if it's not typical of a child," said Manning.

Spreading awareness about DUP15q is important to the Manning's and they are hopeful their daughter will live a long life.

"It's so important for us to raise money for research because a lot of these kids are passing away in their sleep unexpectedly, some of those are from seizures, some of them are due to heart issues and some of them are just unknown," said Manning.

Brielle has also been diagnosed with autism, but in the last year Manning says Brielle has made progress, going from not being able to hold her head up to standing, making her parents hopeful.

Next weekend Manning is planning a benefit to raise money for awareness in Waverly. If you'd like to get involved or learn more about DUP15q CLICK HERE.

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