Long Island sisters find hope in new treatment for crippling disorder

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Lauren Glassberg reports on sisters born with a genetic disease that affects the nervous system.

There is new hope for a pair of sisters from Long Island who are both battling a crippling disorder.

Lisa Panzika and her younger sister Laura Chamaiden were both born with a genetic disease that affects the nervous system, their muscles, endurance and strength.

"The hardest thing about being a mom is not being able to pick them up when they cry or go on rides with them," Chamaiden said.

The disease is called Spinal Muscular Atrophy (SMA), and it makes life very challenging.

SMA causes a progressive weakness of legs and arms and also affects the diaphragm, causing difficulties in breathing.

Some patients will need to use artificial respirators and gastric tubes for feeding.

But, for the first time in their lives, these New Hyde Park sisters are seeing improvements thanks to a newly approved medication called Spinraza.

"They are the first two sibling pair in New York City to be treated for this condition with this new groundbreaking therapy," said Dr. Anthony Geraci, the director of Neuromuscular Medicine at Northwell Health.

The medicine helps the cell produce the proteins needed to move.

"A spinal needle is introduced through the skin and into a space between the bones to puncture the sack," Geraci said. "The medication is then injected into that space where it gets to the neurons."

Each sister already has had four doses and will receive another dose every four months.

"I of course scream and cry a lot through the procedure because I'm afraid of needles, but Dr. Geraci is always patient and caring, and his staff are all wonderful people," Chamaiden said. "I thank them from the bottom of my heart."

It was first used on babies with SMA with positive results.

"I've been given hope and a miracle, one I never thought I'd see in my lifetime," Panzika said. "I'll continue to follow my dreams and aspirations with a brighter outlook."

Related Topics:
healthhealthdisabilitydisability issuesNew Hyde Park
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