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Feb. 28 Proclaimed 'Rare Diseases Day' in West Orange

Cynthia Cumming

Wednesday, February 26, 2014 • 2:10am

WEST ORANGE, NJ - Mayor Robert Parisi and the West Orange Township Council issued a Proclamation naming Feb. 28 "Rare Diseases Day" in West Orange, and two special families were there to thank them.

The Senek and Harris families, West Orange residents, both have children that have been diagnosed with extremely rare diseases.  Krysta and Sheldon Senek's 5-year-old daughter, Josephine, has a disease called Tetrasomy 8P Mosaicism.  An extra chromosome 8 appears in some of her cells, causing various physiological and learning issues.  She is missing the corpus callosum, a band of nerve fibers that divides the cerebrum into the right and left hemispheres as well as connecting both sides of the brain.  She is one of 22 people in the world diagnosed with the disease.

Kathi Gianni Harris' son Mike has chromosome duplication, autism and Mitochondrial Disease. Mitochondria, building blocks of cells (except red blood cells) creates 90 percent of the energy a body needs to sustain life and support growth.  When they do not function correctly or at all, all sorts of physical and psychological diseases result. Her daughter has chromosomal duplication, as does Kathi, but they are both high functioning.

The children attend West Orange Schools and both families thanked the school district for all they have done to work with, and to help, their children.  There are no cures for the diseases, and money for research is nearly non-existent because they are so rare, making research unprofitable for companies.

Begun in 2008, Rare Disease Day is a worldwide effort whose main objective "is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives."

For Krysta Senek, life is a bittersweet combination of love and unpredictability, with no resources to help her know how to deal with her daughter. She says of Josephine's behavior, " We have no idea why and no research to do to help give us a clue of how to handle it. By getting our story out in the open, maybe there will be SOMEONE ELSE out there who CAN understand or who has the SAME disorder."

She continued "Anyway, I guess the most important things I want to get across about rare disorders and my daughter are: don't make an assumption THAT kid is spoiled and THOSE parents are not in control - Josephine's disorder is invisible physically, but her behavior can be very severe for no reason."

Both families were all smiles and excitement as they gathered to hear the Proclamation read. Michael and sat and watched the proceedings intently as Josephine chattered and twirled around Council Chambers in a polka dot dress and tights.  

The community can help by learning more about rare diseases and how they affect children and families. 200,000 people are suffering from 7,000 rare diseases that are receiving little or no recognition or research.

On Thursday, Feb. 27 from 11 a.m. to 11 p.m., the West Orange Fridays at 495 Prospect Ave. will donate 20 percent of sales to Chromosome Disorder Outreach.  The flyer is attached to the article. You must present the flyer to have the 20 percent donated.

Contact Krysta Senek by visiting her blog, http://www.normalforjosephine.com.

 

 

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