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Twelve months ago this family had their life turned upside down.

Pam and Chris Andrews’ were told the news both of their daughters have a rare, fatal genetic disorder referred to as “childhood Alzheimer’s.” ( Niemann-Pick disease type C1)

Most children diagnosed with the disease are dead within 10 years of diagnosis, Dr. James Gibson, a geneticist at Ascension’s Dell Children’s Medical Center in Austin, Texas, told them, shares PEOPLE.

Six-year-old Belle was diagnosed on March 10, 2016. Three weeks later, Abby, now 2, was diagnosed. Both Chris and Pam, who met on Match.com in October 2006, inherited an autosomal recessive gene and both girls inherited the genes from them. The girls had a 25 percent chance of inheriting both genes from their parents.

“We were facing losing our entire family,” says Pam, 44. “There was no more normal,” says Chris, 45. “Nothing was ever going to be normal again…We were crushed.”

Though devastated, the Andrews quickly rallied and found a promising clinical trial for the disease. The drug VTS-270, made by Vtesse, Inc., is not a cure but treats the symptoms of the disease, which include gradually losing the ability to think, hear, walk, talk and eat on their own.

They also decided to start the Firefly Fund, a foundation to find a cure for this and other rare, neurodegenerative diseases that affect children.

NPC1 is a progressive, neurodegenerative disease where the lysosomes of all cells of the body accumulate toxic amounts of cholesterol, causing progressive damage to the brain, spleen, liver, and other tissues.

If left untreated, Belle and Abby would likely eventually suffer from seizures, dementia, ataxia, and cataplexy. As the disease progresses, children diagnosed with NPC1 require feeding tubes because of difficulty swallowing, are confined to wheelchairs, are unable to speak or recognize loved ones, and die in adolescence.

“We will not let them die,” vows Pam.

Adds Chris: “No matter what we have to do, no matter who we have to call, no matter how much money we have to raise — whatever it takes — nobody’s going to take my kids.”

This is so heartbreaking. My own mother had early onset dementia. She was finally diagnosed in her 50s. That was hard enough. I can not fathom a young child going through the same.

We wish them all the best and hope that new research finds a cure for these young girls before it’s too late.

Share your comments below.

Image via firefly fund

  • that is so sad and a reminder that life can be cruel to some. hope they can get some sort of quality of life and better yet, a cure. good luck to them and theirs

    Reply

  • Aw, I can imagine how devastated these parents are and that they can’t accept this disease is going to take their kids away. Bless them !
    Hope and pray that the clinical trial drug for the disease can treat the symptoms of the disease well.
    and that the foundation can find a cure for this neuro-degenerative disease in time !

    Reply

  • How sad for this family :( I hope they make the most of the limited time they have with their girls

    Reply

  • It is hard to imagine what this family is going through, to have both children stricken with is really not fair. I do wish them the best for the future and hope that something comes up to save one if not both of these darlings.

    Reply

  • I have never heard of Childhood Alzheimers. Being genetic means if they had more children before these two were diagnosed they would have the disease too. Alzheimers is a cruel disease. I know of 2 adults with Alzheimers who both passed away with kidney failure.

    Reply

  • So devastating when you don’t know you’re carrying a recessive gene till your child gets an unwanted diagnosis.

    Reply

  • Hope they can get the funds to fight this for their family.

    Reply

  • I truly hope medical research can find a cure for Alzheimer’s and dementia.

    Reply

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