Our son's story changed the course of our lives. Here we share the steps we have taken along the way.
Julián's health led us to leave everyday life in the countryside to focus on him. Our family's priorities, days and plans changed. El Carancho remains our home and our starting point.
From the first difficulties through diagnosis, we have been seeking answers and organising the care he needs. This timeline brings together documented milestones; it is not his complete medical history.
Choose what you need. Each card shows its date and links to the original source. Availability and eligibility must be confirmed with each study centre.
Links reviewed 21 October 2026. Check each record for current recruiting status and criteria.
The safety committee recommended starting cohort 3 (18 mg/kg). The study reports recruitment for Part A for ambulant participants aged 4–20 who are amenable to exon 44 skipping. The centre must confirm available places, participation from Chile and individual genetic suitability.
Entrada Therapeutics · 14 October 2026 announcementPhase 1/2 study. The sponsor reported the first participant dosed in August. Check sites and criteria in the registry; participation requires individual assessment.
Precision BioSciences · release and NCT07429240 recordPhase 3 study for mutations amenable to exon 44 skipping. Genetic criteria are specific; check the record before contacting a centre.
Health Canada · record updated 10 October 2026Gather the genetic report and discuss age, criteria, visits and risks with the treating team. A public record does not mean a place is available or that a treatment is approved.
Family guides · Duchenne ChileHow a study works · ClinicalTrials.govHow to read a record · ClinicalTrials.govInformation to discuss with the medical team. It does not confirm access to a trial or replace individual assessment.
Julián’s journey showed us how much a clear genetic diagnosis matters. We want to gather resources for families in Chile starting this process: what to ask, how to keep the report and where to seek guidance. This is an information space; it does not yet fund or arrange testing.
Desde el 7 de octubre de 2026
Último total publicado: 21 de octubre de 2026
Planilla familiar · 55 aportes registrados · 7–21 oct 2026 · Período: 7 de octubre de 2026 – 21 de octubre de 2026
Breakdown available in the family worksheetUncovered nights, meals during travel, paperwork and operating costs. Flights are covered.
Julián’s transfers, assessments and therapies as confirmed by a budget.
Rent, food and everyday expenses while supporting Julián.
Unexpected costs linked to this process, recorded with date, amount and evidence.
The total reflects contributions entered in the family worksheet for 7–21 October. It is not the available balance: expenses and any transfers between accounts still require reconciliation. The circle does not show progress towards a goal.
Contributions entered for 7–21 October 2026. Individual contribution dates were not provided.
Banco de Chile and BancoEstado appear in the breakdown, not as payment instructions. The cash contribution is shown without naming the donor. The public worksheet contains entered amounts without donors’ personal data.
The public worksheet shows reported income for the period and anonymous details for each contribution. The next report will add documented expenses, available balance and budgeted goals; account transfers will be checked first to avoid duplicates.
We will update the figures when the family supplies new reports. Thank-you notes will use an initial and surname only with each person’s permission.
These are potential future contributions. None is included in the amount recorded so far.
Generation X · initiative to confirm.
Year 59 · initiative to confirm.
In preparation; rules, dates and a link will be published once confirmed.
A working forecast without invented amounts or assumed clinical dates.
Reconcile contributions by account, confirm available funds and request quotes for the remaining stay, travel and therapies.
Prioritize the unfunded accommodation and operating costs according to dates and quotes confirmed by the family.
Publish reconciled income and expenses; adjust needs if support, appointments or travel plans change.
Review the balance and define therapy, transportation and daily living needs for the next period.
Flights: covered. Accommodation: partly covered; nights and remaining cost are still to be confirmed. Without these figures, no monetary target or progress percentage is published.
We began to notice that Julián had difficulty getting up from the floor and climbing stairs. Those difficulties led us to look for answers.
A new neurological assessment and tests directed the investigation towards a neuromuscular condition.
Julián was hospitalised for a multidisciplinary assessment at Hospital Clínico San Borja Arriarán. The sample for genetic testing was collected on 26 November.
The genetic report confirmed Duchenne muscular dystrophy, with a deletion of exon 45 of the DMD gene. That result marked the beginning of a new chapter for our family.
Treatment and multidisciplinary rehabilitation became part of our routine. We reorganised family life to focus on Julián.
We prepared a clinical summary and functional assessment material for a preliminary evaluation related to FUNCTION-DMD. Submitting information does not mean acceptance into a trial.
We prepared intake documents to request a neuromuscular assessment and a second opinion at Children's Hospital of Philadelphia (CHOP). This preparation does not establish a confirmed appointment or treatment.
We are organising a nationwide fundraiser and preparing short- and medium-term goals. We want to share this journey with clear information and confirmed progress.