Spinal muscular atrophy research is a cause close to Los Altos resident Marge Shiveley’s heart.
Shively’s daughter, Linda, founded the Northern California Walk-n-Roll fundraiser for SMA 16 years ago, honoring her daughter and Shively’s granddaughter, Jessica, who was diagnosed with the disease at 3 months old and died nine days before her fourth birthday.
SMA is the No. 1 cause of death in infants. One in 50 people is a carrier, and the disease afflicts one in 10,000 babies born, no matter the gender or ethnicity. SMA impacts a child’s ability to crawl, sit, walk, swallow and breathe.
Shively is now advocating for another family in the throes of SMA treatment.
Eighteen-month-old Aleksandr Kostanyan, born in Yerevan, Armenia, was diagnosed with SMA Type I. Stanford University invited Aleksandr’s family more than a year ago to participate in a clinical trial for the drug Zolgensma. The results, according to Aleksandr’s mother, Svetlana Sargsyan, have been “dramatically effective.” Her son is now eating and breathing on his own, has proper head control and sits without support for more than 20 minutes at a time.
“My family is very happy to live with our treasure Aleksandr,” Sargsyan said. “He makes us very happy.”
Aleksandr’s participation in the trial also included physical, occupational and aquatic therapy and enrollment in Early Start, a state intervention program for infants and toddlers with disabilities.
“He is a very happy baby boy,” Sargsyan said of her son.
The support group Cure SMA sent Aleksandr a box of toys when he was newly diagnosed, and Sargsyan said the family appreciated and has learned much from the organization’s resources, conferences and webinars.
Aleksandr’s participation in the trial ended June, and the family no longer receives free housing and other help to enable their stay. The family has opted to remain in the U.S. because Armenia cannot provide the care Aleksandr will need for his SMA.
“Unfortunately, I have to admit that our society in Armenia is not yet advanced enough to accept disabled persons as equal,” Sargsyan said. “So for these reasons, our family decided to leave everything behind in Armenia and start a new and challenging life in California for the sake of our son.”
According to Shively, the family’s visas expire in September. Currently they are staying at Stanford’s Ronald McDonald House and continuing physical and occupational therapy for Aleksandr. Shively said the parents are highly educated, teaching high school and middle school French and more, and information technology at the university level. They also have a 12-year-old son, David, who attends middle school in Palo Alto.
Shively said the family needs help extending visas, a car (maximum $2,000; must have four doors), jobs and housing. They are willing to work as live-in help, she added, and can cook, clean, do odd jobs and garden.
The family also needs transportation for four to the Walk-n-Roll for SMA fundraiser Aug. 24 at Kennedy Grove Regional Recreation Area in El Sobrante (events.curesma.org/norcalwalk).