NEW YORK (CBSNewYork) — A family from Brooklyn is trying to raise more than $2 million to help their sons, who have a rare genetic disease.
It’s a struggle countless families face, especially when they’re fighting something with no cure, CBSN New York’s Cindy Hsu reported Thursday.
Gary and Jennie Landsman were thrilled when Benny was born, and everything looked good until he was about 6 months old when he seemed somewhat delayed.
“We took him to doctor after doctor, different specialists, and nobody was really able to diagnose him,” Jennie said.
Then came Josh, and two weeks after he was born both he and Benny were diagnosed with Canavan disease, a rare inherited brain disease. There’s no cure, and most children with Canavan live three to 10 years.
“My world kind of collapsed,” Jennie said.
“Hearing your baby has a death sentence is nothing a parent should never have to hear,” Gary added. “They don’t crawl, they don’t walk, they don’t talk, they have trouble feeding themselves.”
The Landsmans researched all they could and found neuroscientist Dr. Paola Leone was the only researcher in the country looking for a treatment. The Landsmans and other families are now trying to raise $2.5 million for a gene-therapy trial to help eight children with Canavan, and possibly benefit patients with many other diseases.
“Parkinson’s disease, all types of dementia, including Alzheimer’s disease. Of course, multiple sclerosis, and ALS as well,” said Dr. Leone, who works at Rowan University’s School of Osteopathic Medicine.
Jordana Holovach lost her son, Jacob, to a rare disease three years ago and now helps other families facing the same challenge. Very often, fighting a rare disease means no insurance coverage for anything experimental. Holovach said it’s important to build a community of support.
“Friends, families, business associates, colleagues,” Holovach said.
She said it’s tough but important for families to share their stories.
“I would take as much photo and video content as possible, so that people feel that they can embrace and be a part of it, letting them come into your home everyday, posting as much as you can,” Holovach said.
As the Landsmans work to raise awareness and millions of dollars for research, they said they try to treat each day as a gift.
“Right now, I look at every single day as an opportunity to have joy,” Jennie said.
And to live in the moment.
In the U.S., a rare disease is defined as a condition that affects fewer than 200,000 people. Right now, there are 7,000 rare diseases. For more information on Canavan disease and how to donate to the Landsman’s cause, please click here.