Ontario girl with Rett Syndrome denied access to promising gene therapy trial, parents say
Lucia Vaccaro, a four-year-old girl with Rett Syndrome, was initially selected for a promising gene therapy trial but later became ineligible due to changes in the trial's age requirements. Her parents attempted to access the therapy through Health Canada's special access program, but their request was denied without a clear explanation. The family is concerned about the lack of transparency and accountability in accessing emerging therapies for Canadians with rare conditions like Lucia's.
- ▪Lucia was diagnosed with Rett Syndrome, a neurodevelopmental disorder that affects motor skills and language.
- ▪The gene therapy trial initially included children aged two to six but later restricted eligibility to only two- and three-year-olds.
- ▪The Vaccaro family was denied access to the therapy through Health Canada's special access program, leaving them without treatment options.
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| Original publisher | The Globe and Mail |
| Canonical URL | https://www.theglobeandmail.com/canada/article-ontario-girl-with-rett-syndrome-denied-access-to-promising-gene/ |
| Publication time | Sat, 23 May 2026 11:00:00 +0000 |
| Retrieval time | 2026-05-23T11:02:26.394Z |
| Last seen | 2026-05-23T11:02:26.394Z |
| Headline source | Publisher (no WeSearch rewrite) |
| Excerpt source | publisher body |
| Excerpt method | First ~120 words (~800 chars) of extracted publisher body, fair-use limited. |
| Summary | WeSearch · cerebras-chat (WeSearch summarizer) |
| Summary source text | contentText |
| Citation coverage | Summary is a WeSearch-generated derivative; primary citation is the original publisher URL. |
| Cluster | xrxCHJCLNcv0 |
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| Ranking reason | Story pages are not engagement-ranked. Hub feeds use recency, with optional source-diversified chronological ordering (cap consecutive stories per source). No personalized ranking. |
| Publisher visit | Yes — open original |
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| Retrieval / RAG | May the content be exposed for third-party retrieval-augmented generation? | Not asserted |
| Model training | May the content be used to train AI models? | Not asserted |
| Commercial reuse | May the content be reused commercially? | Not permitted |
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Opening excerpt (first ~120 words) tap to expand
Open this photo in gallery:Rana and Joseph Vaccaro with their daughter Lucia, Ottawa. May 21.Dave Chan/The Globe and MailShareSave for laterPlease log in to bookmark this story.Log InCreate Free AccountRana and Joseph Vaccaro could barely contain their excitement inside a Montreal children’s hospital last December. Holding on to her four-year-old daughter, Ms. Vaccaro whispered “Finally, you’re in.”Their daughter, Lucia, was diagnosed two years earlier with Rett Syndrome, a rare and complex neurodevelopmental disorder that affects how a brain develops and progressively erodes motor skills and language.
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