2014-07-31 / Front Page

Grandfather dedicated to helping ailing baby

By AMY ROSEN
Staff Writer


Jackson Conner Silva will benefit from the proceeds of the Steeplechase Distance Walk/Run on Sept. 28 in Hillsborough. Jackson Conner Silva will benefit from the proceeds of the Steeplechase Distance Walk/Run on Sept. 28 in Hillsborough. The Silva family was thrilled for the arrival of a baby boy a few months ago. His parents, Tim and Tara of Garwood, named him Jackson Conner.

The first grandchild for Tim’s parents, David and Maria of Edison — where Tim grew up — Jackson was born outwardly healthy, with a perfect Apgar score, according to grandpa David.

But eight weeks later, the family noticed that Jackson was not moving his arms and legs, and not reaching for his mother’s hair as other babies his age do.

“They say ignorance is bliss,” David later wrote. “Until May 19, 2014, I was ignorant of a horrible disease called spinal muscular atrophy (SMA).”

That day was when he found out that Jackson had been diagnosed with SMA type 1. He was 3 months old.

SMA is a rare disorder, occurring in about eight of every 100,000 live births, and affecting approximately one of every 6,000 to 10,000 individuals worldwide.

No known cure exists for the genetic neuromuscular disease that is the leading genetic cause of death in infants and toddlers, according to the SMA Foundation.

One of approximately 40 persons are carriers of the SMA gene. If both parents are carriers, each of their children has a one in four chance of having SMA.

A disease of the motor neurons, SMA is characterized by muscle atrophy and weakness. The motor neurons affect the voluntary muscles throughout the body used for crawling, walking, head and neck control, swallowing and even breathing, according to Families of SMA (FSMA), a charity supporting SMA research.

The brain’s cognitive functions and the ability to feel objects and pain are not affected.

The young parents are hoping to enroll Jackson in a clinical trial that might help the infant, as he remains blissfully unaware of what is happening to him.

Jessica Moyer started the New Jersey/Delaware chapter of FSMA and carries on in memory of her son, Steven, whom she lost 12 years ago at 9 months old. “There’s been tons of positive changes as far as research is concerned,” Moyer said, adding that Pfizer has taken an interest. “There are five clinical trials to treat or cure SMA. There’s definitely more to come.”

Thanks to fundraisers, FSMA has invested $19 million in SMA drug development since 2000. More information can be found at www.fsma.org/research/drugdiscovery.

David aims to influence researchers to put more funding and effort into finding a cure for the disease, not just for Jackson, but also for other children with SMA. He also hopes to attract a celebrity to raise awareness about the illness.

August is SMA Awareness Month. In doing their part, the Silva family also wants to encourage those considering starting a family to go for genetic testing in advance.

Although David and Maria, their family, friends and even strangers have stepped up to offer financial support to Tim and Tara, they also need funding for Jackson’s ongoing care. David set up a website where people can donate.

“We will do what we can as grandparents and family, but we don’t have deep pockets,” David said.

In addition, as they seek the best health care possible for their baby, Tim and Tara will incur travel expenses and costs for accommodations. Jackson can’t fly or take public transportation due to pressure on his lungs and the risk of infection.

David is disabled, and has survived several life-threatening medical events.

“I should have died four years ago three times, and I should be in a wheelchair and I’m not — and I’m alive,” he said. “So, I believe in miracles.”

A Hillsborough-based organization called Steps Together helps children via run/walk events. Jackson will be one of 11 children with critical needs who will benefit from the proceeds of the Steeplechase Distance Walk/Run slated for Sept. 28 in Hillsborough. The event will consist of a 2-mile walk, 5K 10K and children’s sprints. Virtual participants are also welcome. Those interested can register for Team Jackson online at www.steps-together.org.

For additional information, visit www.giveforward.com/fundraiser/mzr4/baby -jackson-s-journey.

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