Hope For Gabriel

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 😉

10/06/2026

Hello, son,

I’m taking 30 minutes in the middle of the chaos that is life to write here.
It’s already been a few weeks since I last came by.
As they say in France, “no news is good news.”
I wouldn’t say it’s good news, but in any case the news about you is stable.

Let’s go over the usual points:

Nutrition

We’re continuing to make progress.
Last week you didn’t gain any weight and we ran into a few difficulties, but overall it’s much better than before.
You put a little weight back on last month, which keeps us from skimming that infamous malnutrition curve that we’d already fallen below.
The issue you have today is that you hate eating anything that isn’t a perfectly smooth purée or applesauce. If there’s even the tiniest lump in it, you don’t want it.
That’s because you spent 6 months with a feeding tube and all the sensitivity in your mouth is out of whack. We’re working on it, with some slightly strange massages around your mouth.
I think we just need to be patient and we’ll get through this part. I’m pretty confident.

Respiratory

For the past few weeks, you’ve finally been accepting your NIV while you’re awake.
That changes everything, because we’re now aiming for a target of 6 hours per 24-hour period.
Usually it’s 2 hours in the morning, 2 hours in the afternoon, and 2 hours when you go to bed.
On the other hand, if you fall asleep with it and wake up with it, you scream and you hate it.
But what’s certain is that this NIV does you a world of good, and you’re MUCH MUCH less tired in the evening. Your retractions are less pronounced, you hardly wheeze. And so, indirectly, you use less energy, which probably makes it easier for you to gain weight.
I like to believe—and I hope—that if we do a lot of NIV during your first years, all the areas of your lungs that have collapsed will gradually reopen. And that later, when you’re older, you won’t need it anymore. That’s why we insist, even when you scream. One day you’ll understand that those hours with the mask were an investment.
Your latest tests show that you’re a bit low on IgG, the immune system’s “veteran soldiers”: the ones that patrol the blood and protect the lungs from bacteria. When there isn’t enough, the body has a harder time fighting off respiratory infections, which is a problem with already fragile lungs. We’re going to keep a close eye on that.
We’re still waiting to see whether pulse therapy will happen, but it will most likely be this summer.

Geek vs. the healthcare world

Son, I’m a geek.
When I have a problem to solve with tech, I build solutions.
And I’m tired of always having to give every document to every doctor. So I built an app, BIBI, that connects directly to your pulse oximeter and indexes all the data. I can easily send healthcare professionals a link with all your blood test results, vaccines, and weight charts.
At the same time, we’re still fighting with the insurance companies.
Honestly, with my working hours—which are already limited—I must spend about 60% of my time dealing with projects/meetings/emails/messages because of what the insurance won’t reimburse (despite court rulings in our favor). It might still be manageable if that insurance didn’t cost us a fortune for nothing. The worst part is having one of their employees as a direct contact and seeing how much they don’t give a damn about leaving people in deep trouble. I’d be ashamed in their place. I deeply hate those people, and I didn’t think it was possible, but this whole journey has shown me what it is to feel hatred.
I make up for it by building systems that automate as much of this hell as possible, so that in the long run I spend as little time on it as I can.

“Normal” life

A few months ago, I was telling you that I’d like to have a normal life.
I’ve understood that this will never happen, but I’m trying to find joy in the life we do have.
Because it could be much worse too, considering what we’ve been through.
I’m glad to be self-employed and to be able to manage my time however I want, without having to manage employees.
It gives me the flexibility to see you and spend time with you whenever I want and whenever it’s needed.
And I don’t know what it’ll be like when you’re 20 and reading all this. But in our time, having an online business is real freedom, and I’m glad I oriented my whole life around it—I can see you more often working from home!
Every day, I’m there when you wake up, and when you go to bed.
You give me kisses, you laugh every time I ask you if you’re the most handsome.
We also go to the beach every Sunday with your mom.
I have to admit that at first it was quite a challenge—the stress about the virus, etc.—but we avoid crowds, we stay in our bubble, and we’re getting more and more relaxed. This Sunday, you sat in the water and got your first wave. You were so cute discovering all of that.
High season is about to start here, and the rain and all its humidity will stop. I’m hopeful we can be a bit more relaxed about viruses until December.

We also almost cut your hair. We have to admit it’s long, but you’re so cute like that.

End of this blog?

I’m thinking about maybe stopping writing to you here and writing to you in a more private journal.
Right now we’re sharing for Grandpa’s challenge, Les Cols du Souffle, and I have to admit I really don’t like putting our family on display.
I tell myself it’s a necessary evil, and it’s true that it brings us interesting contacts around the disease and it also raises awareness.
I don’t know what the future holds. We learned last week that a 6-year-old child with the same disease as you died in Spain. I don’t have all the details, but I have to say what we hear is more often negative than positive. And I like to believe it’s simply because the people who make it through never want to hear about it again.
Illness is the topic everyone wants to avoid. Because it points to death, and nobody likes death.
Over time I’m discovering that, actually, if you want to raise awareness, you have to make people laugh and have a huge amount of empathy. I think that’s why I love dark humor. And self-deprecation. If you can laugh about illness, then you make others laugh and you earn respect. Like your great-grandmother used to tell me when I was little: “better to make people envy you than pity you.” I think about all of this a lot because I’d like to grow our association, or create a new one, to make your disease known and be on the front line to find solutions. But how do you communicate effectively to help as many people as possible? There’s prevention, challenges like your grandpa’s, but we also need to be innovative.

You’ll see, son: in life, you have to bring value to people if you want to receive some in return. It’s sometimes unfair in serious situations, especially when it’s not your fault. But it’s human.

So let me give you what I think I’ve understood, hoping it will be useful to you.

People run from illness. Not because they’re mean, but because it reminds them that they too will die one day. It’s a reflex, not a choice. Don’t hold it against them too much.

If you inspire pity, people look down on you. If you make them laugh, they sit down next to you.
That’s the whole difference.
When you’re the first to laugh at your problems, you give others permission to breathe. And then they stay.

My great-great-grandmother used to tell me in her own words, when your dad liked to snack a little too much on cheese and cured sausage: “better to make people envy you than pity you.”

And then there’s one last thing.
You, today, don’t produce anything. You don’t bring in anything.
And yet you are what has the most value in my life.
So when you meet someone at rock bottom, remember that a person’s value isn’t always visible in the moment.
You’ll know that better than anyone.

I love you, my little potato.

Dad