Our mission is to secure the life-changing gene therapy Lucia Vaccaro was promised. Lucia is a Canadian, Italian, and Lebanese four year old from Ottawa, Canada.

When Lucia was 30 months old, our world shifted. Lucia was diagnosed with Rett Syndrome - a rare neurological "lightning strike" affecting approximately 1 in every 10,000 girls. It is a spontaneous genetic mutation that steals a child’s ability to speak, walk, play and use their hands.

For years, we have lived a marathon. Between Lucia’s relentless schedule of OT, PT, speech, hydrotherapy, and hippotherapy - and raising her sibling, who is under four—our lives have been dedicated to one thing: keeping Lucia ready for a cure.

We spent years advocating for paediatric gene therapy clinical trials to come to Canada. In December, we thought we had finally won. After years of fighting, we were told that Lucia had been selected by our Neurologist for the gene therapy trial. Gene therapy addresses the root genetic cause of this devastating disease. She is an ideal candidate: she is still mobile, her symptoms are stable, she has no seizures, and no spinal curvature (scoliosis).

For the first time, we looked our daughter in the eyes and told her she was going to get better. The change was instant; we saw her stress and severe anxiety ease the moment she felt our hope and the confidence of her neurologist.

Then, the floor dropped out.

Despite being told the trial would cover ages 2 to less than 6, the protocol was abruptly restricted to ages 2–3 and 6–22. Because of a one-year age gap, our miracle vanished. Lucia was excluded from the very trial we fought to expand in Canada.

THE REALITY OF CANADA'S GAP

If we wait for the "standard" path, it will be at least 8 years before this drug is approved and funded in Canada. By then, Lucia will be 12 if we're lucky, dead if we're not. We expect OHIP to cap coverage at age 10, meaning by the time the paperwork is signed, Lucia will be "too old" for the system to care.

We are not waiting for a system that has already turned its back on her.

The heartbreaking reality of a classic Rett Syndrome diagnosis is that it severely shortens a child's lifespan, far beyond what standard online statistics might suggest.

While official studies often show optimistic survival rates into adulthood, they frequently overlook the tragic reality of young girls who pass away before even reaching their 10th birthday. This discrepancy happens because official records often list immediate complications—like respiratory issues or uncontrolled seizures—rather than Rett Syndrome itself as the cause of death.

For a child like Lucia who faces the most severe, classical form of this disorder, everyday survival is a constant battle against immobility, feeding challenges, and deteriorating health. Acknowledging the true, terminal risk that Rett Syndrome poses to Lucia is vital, as it highlights the profound and heartbreaking urgency of our fight to give her the best life possible.

OUR MISSION: $5 Million for Lucia’s Future

We are raising $5 million USD to take the power back from pharmaceutical protocols and bureaucratic timelines. This fund is dedicated to covering the astronomical costs of out-of-pocket genomic medicine.

Lucia is ready. She is stable. She is the prime candidate as documented by her Neurologist with Taysha Gene Therapies. The only thing standing between her and a functioning life is a line of text in a corporate protocol.

Please help us get Lucia the treatment she was promised. Every share and every dollar is a step toward the miracle she still believes is coming.

Follow Lucia's story at Luciagainsttime.ca