Young Opelika boy with rare disease dies : oanow

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Young Opelika boy with rare disease dies

Young Opelika boy with rare disease dies

Porter Ross Heatherly passed away Thursday morning in the arms of his parents after defying odds and spreading a message of hope to many.Heatherly was born with a rare disease called GM1 gangliosidosis, an inherited neurodegenerative disorder that progressively destroys nerve cells in the brain and spinal cord, according to the U.S. National Library of Medicine.Despite doctors' predictions that Heatherly's parents, Michael and Sara, would only have two to three years with their son, he surpassed the outlook and celebrated his fourth birthday on Sept. 14.The family has celebrated Heatherly's birthday monthly since he reached 5 months old.


not to mention commercialappeal

Memphis girls battle rare and incurable Batten disease

Memphis girls battle rare and incurable Batten disease

Dana Gieselmann evokes a smile as she tickles her daughter Milla, 6, who was diagnosed with Batten disease at 4 1/2 years old.(Photo: Nikki Boertman/The Commercial Appeal)As always, there's medicine to administer, food to prepare and nurses' visits to manage, but on a recent late afternoon, during a lull before the particularly chaotic time of day they jokingly call "arsenic hour," Dana and Frazer Gieselmann nestled on a couch with their daughters while reflecting back on a rare occasion when they enjoyed a real, honest-to-goodness family outing.It had been on a Sunday.They loaded up the kids, along with bikes, a bike trailer and a special stroller, and drove from their East Memphis home to the new Big River Crossing boardwalk on the Harahan Bridge.They spent that late afternoon pedaling and strolling across the Mississippi River, soaking in the nice weather, friendly crowds and panorama of Downtown Memphis before watching the sunset and capping the day off with a stop at an eatery.


by the same token on nydailynews

Maine hospital treated patient with rare brain disease

Maine hospital treated patient with rare brain disease

PORTLAND, Maine — Maine's largest hospital has confirmed it treated a patient diagnosed with a potentially deadly prion disease, a rare progressive neurodegenerative disorder.Officials at Maine Medical Center in Portland learned this week the patient had the extremely rare brain disease.On Friday, a Case Western University surveillance center confirmed the diagnosis as Creutzfeldt-Jakob disease.The hospital postponed elective surgeries that were set for Wednesday and Thursday while it decontaminated surgical equipment and relied on loaned equipment for emergency surgeries.