Hope For Gabriel

18/07/2026

Hello, son,

It’s been a long time since I last wrote to you.

At the moment, I feel like I’m constantly racing against the clock.

There’s my work, with the websites, clients, and projects following one after another. And then there’s everything we’re setting up for Grandpa Robert’s challenge, Les Cols du Souffle.

I’m taking care of all the communication, the organization, the social media… and it’s a bit less time that I can spend here, but it’s just as important!

On his end, Grandpa Robert is also very busy. The media is starting to take an interest in his adventure, interviews are lining up, and his schedule is filling up.

I don’t think I have the words to tell you how exceptional what he is about to do really is.

Few grandfathers would cycle over 19 mountain passes and hundreds of kilometers for their grandson.

I hope that one day, when you’re old enough to understand all this, you’ll realize what it represented.

Because you, too, have already pushed yourself much further than most people ever will.

At only a few weeks old, you faced trials that many adults will never have to go through. And despite everything, you keep moving forward.

Grandpa is showing us something important, too.

That in life, we can choose not to remain a spectator. We can take action, help others, and defend a cause greater than ourselves. I hope you’ll always keep that idea with you.

Unfortunately, I won’t be able to be by his side physically during his whole adventure, but I’m going to try to capture as many memories of it as possible.

We’re doing all this for you, of course. But also for the children who will come after you. To raise awareness about bronchiolitis obliterans, to meet the right people and, step by step, to make things move forward.

I’m convinced that great stories often start like this. An idea. A meeting. One person touched by another.

Daily life

But in the middle of all that, life goes on.

You’re continuing with respiratory physiotherapy, motor physiotherapy, and you’re also seeing your occupational therapist.

You’ve passed the nine-kilo mark, and that is quite a victory.

Your mom is very busy too. Her work is giving her quite a few worries at the moment. Despite everything, we enjoy every moment with you.

I often tell myself that I’m incredibly lucky to be able to spend so much time by your side.

Even when I’m working, you’re never very far away.

I hear you playing, singing, laughing. You often come to look at me with your big smile, as if to check that I’m still there.

These are very simple moments, but I already know they will be among the most beautiful memories of my life.

And you’re progressing week by week.

Right now, you’re having fun making animal sounds.

The cow, the cat… Well, the lion still sounds a lot like the cat, but I love it.

Every little bit of progress makes us smile.

A few weeks ago, a mother wrote to us.

She explained that discovering your story helped her get through a difficult time with her own son, who was also diagnosed.

Reading her message, I told myself that all those hours spent writing, responding to messages, posting updates, or telling your story finally made sense.

If your journey can help even just one family feel a little less alone, then it’s all worth it.

See you soon.

I love you, my little potato.

Dad.

21/06/2026

Hello Son,

I said I was stopping, but your mom told me to keep going, so I’m keeping at it!

The news is pretty much the same and you’re doing quite well—let’s say stable!

Nutrition

Stable, we’re on a plateau.

We are well supported by Yaëlle from AFPIE in France and her dedicated InfoSNG service, and I can say it’s a huge support (especially for me in French!).

Lung

We had a new appointment with your great physical therapist Evelim from Sao Paulo, who adjusted the treatments, especially since you accept the NIV 6 hours a day now.

We’re also doing EPAP with you now, which you used to hate, and it seems to be having a very positive effect!

NIV + EPAP: it’s a real game-changer for your respiratory exhaustion at the end of the day!

Your mom has become a respiratory therapist. She understands all the terms!

Blood test

Three things to remember, without the jargon:

1. Your adrenal glands are running slow. It’s likely an effect of your corticosteroid treatment for your lungs. Nothing serious, but we’re keeping an eye on it, especially if you get sick. This is the main point we’ll show the endocrinologist at the next appointment.
2. Your defenses are a bit low in the lungs, but your immune system is solid. You react well to vaccines and everything that should be there is there. It looks like a baby thing that settles itself over time. We’re just staying cautious to avoid infections.
3. You’re growing slowly, but that’s normal. No hormonal issues, no anemia. Your body just spends a lot of energy breathing, so the rest goes at its own pace.

Insurance and the joys of Brazil

We had some good news from the Brazilian insurance.

This week they accepted all the reimbursements for the physical therapy for the first time.

Considering it’s our biggest monthly expense! It’s a relief.

At the same time, the judge ruled in our favor. Now the case is with the Ministerio Publico, we are waiting for the insurance company’s response.
Your mother has spent hours on the phone over the last 2 months and the lawyer is putting pressure on them!

Will we make it?

Homecare hasn’t been officially admitted yet, so we’re not getting ahead of ourselves. And all the other care isn’t necessarily covered.

But I think it’s a good sign. Apparently, there’s an 8-month delay between a judge’s decision and full implementation.

It’s still incredible when you see the insurance premiums we pay…

Health insurance in Brazil really deserves some good reforms!

A good idea for the Brazilian people would be for right-wing, left-wing, and other political parties to donate the millions they receive from health plan executives during elections to public healthcare!

So, without a transition, this allows me to thank once again from the bottom of my heart everyone who has supported us and still supports us with donations!

Our expenses are still high, but if the insurance finally does its job, we should be able to breathe a little, and then I’d like to use the next donations for research, but I still don’t know how to go about it!

Which brings me to Grandpa Robert’s challenge!

Grandpa Robert’s challenge and the impact of BOCommunity.org

Your Grandpa Robert is all in for his August challenge, and I’m trying to highlight his work on the internet as best as I can.

I can already say that this challenge is positive for your illness because the communication has already brought us quality contacts in France and I hope to have a big impact on the communication of this rare disease. Partners have joined us. Very soon all this should be relayed in the media.

Also, this week, a mother of a child also suffering from PIBO left a little message that warmed my heart on LinkedIn.
She discovered the site https://bocommunity.org a few months ago when she learned the diagnosis, and your story and our sharing helped her. We exchange regularly, giving each other advice.
Recently, her son also came off oxygen. What a joy!

Son, you don’t know it yet, but your strength to live, linked to our actions, inspires other families to overcome this disease! I’m happy that people can find this platform to meet other families, find answers to their questions, and professionals. I hope this platform can help many others. In any case, it’s what I would have dreamed of finding the day we were told your diagnosis...

Daily Life and Future

I just re-read the article from that cursed date and I wasn’t far off about the short-term future. I hope I’m right about the long term.

The pandemic mode we’re imposing on ourselves to avoid viruses is socially heavy for us.

This week, I had to go do some chores in town and I caught myself feeling anxiety at the thought of leaving the house… and I know your mom isn’t doing very well either.

We’re so afraid of bringing a virus back to you and losing everything we’ve gained, all this time spent trying to make sure you breathe better…
We know, for example, that an “influencer” recently came to the tourist village nearby and her child caught RSV. The whole family was sick. In short, news that doesn’t reassure us… when we know the damage a second virus can do to little lungs like yours.

We tell ourselves we have to get past the 2-year mark, and after that we’ll free ourselves up a bit more.

My secret dream: to FINALLY be able to go to France so you can meet all your family there, including your Grandma Jeannine and your Grandpa Christian.
I feel so guilty that your French family can’t see you…

There you go, my little potato.

You’ll be waking up from your nap soon and I have plenty of things to do before then, so I’m off!

I love you,
Dad

PS: your mom just brought me a cake with a good coffee, it’s Father’s Day in France 😉