Five minutes with… Julio Cantón García, founder of Hope Beyond Diagnosis

RAREYouth
2 days ago
5 min read

RARE Revolution Magazine’s Joe interviews young advocate Julio, founder of new support network Hope Beyond Diagnosis, about being a RARE sibling and why he decided it was the right time to help other families in similar situations.

Hey Julio! Firstly, how are you feeling today, and where are you right now?

Hi! I'm really excited about this, thank you for asking. I'm visiting family in Almería in Spain right now. I’ve just been working on the website and emailing places like this one!

How would you describe yourself to someone who has never met you?

I'm 15. I'm originally from Almería in Spain, but I moved to Ireland when I was eight, so I speak Spanish as my first language, and I'm fluent in English too. I'm the founder of Hope Beyond Diagnosis, and outside of that, I'm just a normal student at Summerhill College. I am brave and respectful. I care a lot about my family, and I like designing and building things and figuring out how to actually get something done rather than just talking about it.

If you feel comfortable doing so, could you tell me what, or rather who, inspired you to found Hope Beyond Diagnosis?

It was my younger brother Pablo. He's nine now, and still doesn't have a diagnosis. Watching my family go to appointment after appointment, test after test, and never quite getting an answer is what made me want to build something. I didn't want other families to feel as alone in that as we sometimes did. I wanted to make a change and make them feel heard and cared for.

Why did you choose the name ‘Hope Beyond Diagnosis’?

I wanted it to say something true straight away—that hope doesn't have to wait for a diagnosis. A lot of support out there is built around having an official diagnosis first, and I wanted the name itself to push back on that a bit.

Why do you think the work you’re doing with Hope Beyond Diagnosis is so needed?

Because so many families are stuck in this in-between place. They're not being ignored exactly, but there isn't really a system built for "we don't have an answer yet." I think that gap is bigger than people realise until they're actually in it. I feel like other families should get to know other families with children who have similar conditions, so they don't feel alone, or like there's nowhere left to turn.

“I feel like other families should get to know other families…so they don’t feel alone, or like there’s nowhere left to turn.”

Founding Hope Beyond Diagnosis at just 15 years old is an incredible achievement. Do you ever feel pressure from yourself or others?

Honestly, yes, sometimes. Mostly it's pressure I put on myself—wanting to make sure I'm actually helping and not just putting something out there for the sake of it. But it mostly motivates me—seeing my brother and imagining what other families have to go through really pushes me to keep going.

You have extensive resources on your website. Why do you think it’s important to cover a wide range of topics, and which one do you find the most useful to your own situation?

Because every family's situation is completely different — what helps one family with communication might be useless to a family dealing with sleep issues, or school meetings, or sensory stuff. I wanted the resource centre to actually reflect that. For my own family, I'd probably say the sibling support guide and the parent wellbeing checklist are the ones that hit closest to us.

What does your brother think about you founding Hope Beyond Diagnosis?

He's still young, and there's really no way for him to understand what I'm doing yet. Honestly, that's part of what's hard for my family—not just this, but wondering what things will look like for him as he gets older. But that's part of why I'm doing this too, even if he can't understand it right now.

As a sibling of someone living with an undiagnosed condition, what’s the best and most challenging thing about it?

The hardest part is probably the uncertainty—not knowing, thinking about what's going to happen to him in the future, and watching my parents carry that. The best part is that it's made our family closer, and it's taught me to be more patient and to notice things other people might miss.

“The hardest part is probably the uncertainty—not knowing, thinking about what's going to happen to him in the future.”

What’s one piece of advice you’d offer to someone with an undiagnosed condition?

You are more than the diagnosis you don't have yet. Waiting for a name for what you're going through doesn't mean you have to wait to be supported, understood, or to keep living your life.

What gives you hope on difficult days?

Honestly, small things—messages from people who say the resources have actually helped them, or organisations like Genetic Alliance, the University of Galway, Young Carers (Family Carers) taking the time to reply and offer support. It reminds me this isn't just me shouting into nothing. People are actually listening.

What do you see in the future for yourself and Hope Beyond Diagnosis?

I want Hope Beyond Diagnosis to keep growing slowly and honestly, with more resources, a real community space, maybe partnerships with places like universities and hospitals down the line. For myself, I don't know exactly what that looks like yet, but I know I want to keep building things that actually help people, not just this.

“I want Hope Beyond Diagnosis to keep growing slowly. I want to keep building things that help people.”

Do you have a favourite inspirational quote? If so, what is it?

Honestly, the one that means the most to me is our own tagline: "Because every child deserves support, even without a diagnosis." I wrote it for the website, but it's genuinely what I believe, so it's become the thing I go back to.

Last time, Millie Flemington-Clare asked: “What’s one assumption people make about you that you wish they’d unlearn?”

Probably that I'm too young to be doing something like this seriously, or that I don't fully understand what I'm getting into. I get why people think that, but it kind of misses the point. I'm doing this because I've lived it, not because of being young.

Finally, what question do you want to ask the next person?

What's something you've learned about yourself through the work that you do that has actually surprised you?