A family is racing to find a cure for their two sons who both suffer from a rare genetic brain condition that could kill them by the age of 10.
Jennie Landsman, 33, noticed her one-year-old son Benny wasn't reaching milestones when he was six months old. And after several doctors told her it was normal, a blood and urine test finally diagnosed him with Canavan disease.
Canavan disease is a degenerative brain disorder in infants that leaves them unable to sit, stand, or talk, eventually losing the ability to swallow, and developing seizures and blindness.
Because it is genetic, a test done on the family's four-month-old son Josh discovered that he too has the disease, and the small signs he is showing now are due to get worse within the next few months if treatment is not found fast.
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Benny, 17 months, (left) and his brother Josh Landsman, four months, (right) suffer from a rare genetic brain disorder called Canavan
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While 17-month-olds are typically beginning to speak and climb, Benny cannot crawl, sit up on his own, roll over, hold his head up or talk.
Josh, who was diagnosed at one month old, is now starting to show signs of underdevelopment.
They also have another brother Michael, seven, who is not affected.
Parents Jennie, who works in the field of Pakua, a Chinese martial art, and Gary, a New York wine taster, started to get concerned when Benny wasn't sitting up on his own at six months old.
Canavan Disease is a progressive brain disorder caused by a genetic mutation and missing enzyme that affects infants.
Children with Canavan Disease are unable to sit, stand, walk or talk.
As degeneration progresses, many children will lose the ability to swallow, develop seizures, and become blind.
There is currently no cure for Canavan Disease and most afflicted children develop fatal complications by the age of 10.
Studies suggest that this disorder affects 1 in 6,400 to 13,500 people in the Ashkenazi Jewish population. The incidence in other populations is unknown.
Two doctors assured her he was a healthy infant and told the worried parents that some babies reach milestones later than others.
A few months went by and Josh was born. That's when a third neurologist finally discovered N-acetylaspartic acid or NNA in Benny's urine, which revealed a missing enzyme and was the key to the diagnosis.
'I had no clue how devastating it was,' Jennie told TODAY.
The mother-of-three said she cried for three days at the news.
'I would hold my baby's hand and I would cry. ''How many more minutes will I hold my baby's hand for? How many more minutes will I see him smile?''' she said.
After the diagnosis,