RENO, Nev. (AP) Chris Hempel wishes her daughters could scream at the grocery store.
Its so frustrating when Im at the store or the airport and see how parents treat their kids, she said. Do you know how much I wish my kid could grab a Snickers bar off the shelf and rip it open and eat it?
Her daughters, Addison and Cassidy, could sing Twinkle Twinkle Little Star four years ago.
Their cute voices can be heard on a tape parents Chris and Hugh Hempel still have.
Today, the 8-year-old identical twins dont sing. They dont talk anymore. They have seizures and periods of dementia. Eventually, they might need feeding tubes and will be bedridden and die.
And while some parents battle candy, the Hempels are meticulous about their daughters diets.
To us, cholesterol is our enemy, Chris said.
On October 17, 2007, the twins were diagnosed with Niemann-Pick Type C disease. It is a rare, fatal genetic disease often called childhood Alzheimers disease. It causes cholesterol to build up and get trapped in the cells, overloading organs and attacking the brain. Most patients dont live past their teens.
Hugh Hempel said he misses the sweet sound of his daughters singing.
Its bittersweet to have it, he said of the tape of Addi and Cassi singing nursery rhymes.
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Reno parents fight for treatment of twins’ disease
