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Help Needed for Six-Year-Old “Silent Angel” with Rare Disease

Emily Progin, PR and Communications Coordinator / 800.642.8399

Release: Immediate


Alisandra Zamora of Gold River is Fighting Rett Syndrome

Gold River, Calif.—“When you combine ANGEL and FIGHTER, you get Alisandra.” That’s how Gold River mom Veronica Rodriguez describes her six-year-old, Alisandra Zamora, who is living with the extremely rare diagnosis Rett Syndrome as well as Charcot Marie Tooth 1A. Veronica and her “silent angel” need help from their community to cover the cost of Ali’s care.

“Ali was in and out of the hospital since she was nine months old,” explains Rodriguez. “Doctors discovered she was silently aspirating, meaning that food was going into her lungs. She couldn’t eat by mouth anymore, and from there, it was a downhill battle with seizures, sleep apnea, and life-threatening situations.” Just before she turned four, doctors diagnosed Alisandra with Rett Syndrome, which affects just 1 in 10,000 female children. Because of the diagnosis and other physical issues, she cannot speak, walk, eat, or breathe without assistance, which means she requires 24-hour-per-day care.

Rodriguez, who has two other children, was born and raised in San Diego but moved to Gold River specifically to secure better care for Ali and stronger professional opportunities. Though Alisandra’s care takes up most of Rodriguez’s time, she still volunteers at her children’s school and regularly attends St. John’s Church in Folsom. “The coronavirus has put a stop to that,” she explained—Alisandra’s diagnosis could make her uniquely vulnerable to the virus because of her compromised immune system.

“Through all the trials and tribulations, she is resilient, always happy and content,” Rodriguez says of Alisandra. “Finding a balance between her needs and raising two other kids can be difficult.” The family’s biggest struggle is financial: insurance refuses to cover the cost of a wheelchair-accessible van, which will allow Alisandra to continue attending weekly doctor’s appointments and physical therapy sessions as she grows. To help with the cost, Alisandra’s family has turned to the national nonprofit Help Hope Live.

Make a donation in honor of Alisandra Zamora at Donations are tax deductible to the extent allowed by law, and all funds raised will be managed by the nonprofit to cover only verified medical and related expenses. Help Hope Live verifies medical and financial need for every patient.

Help Hope Live is a national nonprofit that specializes in engaging communities in secure, tax-deductible fundraising campaigns for people who need a transplant or are affected by a catastrophic injury or illness. Since 1983, campaigns organized by Help Hope Live have raised over $136 million to pay patient expenses.  ###

Written by Emily Progin