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Parents Raise $1.15M for $1.2M Procedure Needed To Save Sons From Fatal Genetic Disease

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Parents would do anything for their children.

Going from husband and wife to mother and father is a significant leap, and suddenly becoming parents gives the world a whole new meaning.

Parents’ worlds revolve around the safety and well-being of their children, no matter what. And that stems from an unconditional love that surpasses almost everything in the world.

Jennie and Gary Landsman quickly understood this concept when they discovered that their two youngest sons had a rare genetic disease called Canavan disease.



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Canavan disease is a fatal neurological disorder that progressively develops over time in young children. It takes the ability to walk, talk, sit up and swallow away from children, leaving them with a lifespan of only 5 to 10 years.

Jennie and Gary quickly learned that their second-oldest son, Benny, was incredibly laid-back and calm. They attributed his inability to sit up or reach for things to his laid-back personality when he was 6 months old. But when he reached 7 and 8 months old, he couldn’t sit up, support his own head or roll over by himself.

Jennie took him to a neurologist to learn that not only did Benny have Canavan disease, but his 1-month-old baby brother Josh did too.

“It was really dark, really scary, and there were lots of tears,” Jennie’s husband Gary said when he found out about his sons’ condition.

The parents were told by doctors to just love on their children for the time they had left, not coming up with any tangible solutions to help them.

However, Jennie and Gary decided to take matters into their own hands to find a cure. Their 8-year-old son Michael Heiney, who is from Jennie’s previous marriage, even read science books to find out as much as he could.

Jennie found a gene therapy that could halt and reverse the disease’s symptoms. This would be done through neuroscientist Dr. Paola Leone, who is the director of the Cell and Gene Therapy Center at Rowan University’s School of Osteopathic Medicine in New Jersey. Her therapy already proved to be functional in mice.

The treatment would include injecting a genetically-engineered virus into the children’s brains to help them produce white matter, which would, in turn, give them back their motor abilities.

“The hope is that they will lead full, functional lives,” Leone said.

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Their only stumbling block: it costs $1.2 million.

“We had no idea how we were going to do this,” she says.“When you have kids you know you would do anything for (them),” Jennie said.

They started by making a video on Youtube, which they also posted on their GoFundMe page that they started on Nov. 25, 2017. They simply asked for help to raise the funds to save their two dear children.


“Waiting for everything you love to be taken away is not a life,” Jennie said on the GoFundMe page. “So we researched and reached out to scientists, doctors, researchers, specialists, and families across the country and across the world and found out that more can be done!”

Over the course of six months, they raised over $1.15 million from the public, as well as their family and friends. And the help didn’t stop there.

“In addition to all your amazing support through this GoFundMe page, people have learned about our story and reached out to the researchers to see what they can do to help. … Finally, we received a bunch of notes and requests from people who want to know how they can help Benny and Josh more directly,” Jennie wrote on the page.

While $1.2 million is their foundation goal, they most certainly need a lot more due to the price of upcoming and inevitable MRIs, plasma and other tests. So with that in mind, they raised their goal to $1.5 million, but they truly believe that goal is attainable because of the generosity of the public.

With the money they’ve raised thus far, they’ve already helped other children receive tests, and they’ve begun medication treatment for their children. In fact, in an update that Jennie gave on the GoFundMe page from just a month ago, Benny is already set to begin his treatment this coming October.

Meanwhile, Jennie and Gary are devoting their lives to finding out the best possible way to help Benny and Josh lead functional lives themselves.

In a Facebook video posted by Jennie, she shows some progress in teaching Benny to swallow liquid from a cup:



With this devotion, Jennie and Gary have one request: “Please help us get to our goal, and help save the lives of Benny, Josh, and children with Canavan’s disease.”

Our thoughts and prayers are with this family as they fight Canavan’s disease.

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Erin Shortall is an editorial intern for The Western Journal. She is currently finishing her Bachelor's Degree at Grove City College. She has a passion for homeless ministry in her home city of Philadelphia, PA.
Erin Shortall is an editorial intern for The Western Journal. She is currently finishing her Bachelor's Degree at Grove City College. She has a major in English, minors in both Writing and Communication Studies, and a Technical Writing concentration. She is currently working on designing and writing a book of poetry to financially support a new homeless ministry of Grove City, PA called Beloved Mercy Ministry. In her spare time, she loves to sing, play piano, exercise, traverse cities, and find the cutest coffee shops. She also has a passion for homeless ministry in her home city of Philadelphia, PA.
Birthplace
Philadelphia, PA
Honors/Awards
Scholarship of Academic Achievement and Moral Character
Education
Grove City College
Location
Grove City, PA
Languages Spoken
English, Spanish
Topics of Expertise
Visual Design, Document Design, Technical Communication, Literature, Computer Ethics




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