Hope For Gabriel

27/04/2026

Hello, son,

I’m publishing this post and you’re currently on my lap.

Here’s the latest news.

You still don’t need oxygen and you’re keeping your saturation above 92, even at night! WELL DONE!

This morning, like every Monday, I weighed you, and you’re back to the weight you had two weeks ago. It’s not really a victory, because you’re bordering on malnutrition, but it is one nonetheless: you haven’t continued to lose weight.

Since your nanny Fabi moved back to Fortaleza for good, it’s really just the three of us at home. It’s a change for us, and we’re learning to adapt. And maybe, in a way, it’s also helping you find your bearings again.

The problem is that you weren’t eating anymore, and especially that you couldn’t stand eating while sitting. By having all our meals together as a family, it seems like this behavior is starting to change. It gives us hope.

Last week, we learned that a child with the same disease as you, over eight years old, was going to be listed to receive a lung transplant. The second one in three months among our contacts in Brazil. I can’t even imagine what those parents are going through. And as parents of a child with the same disease, it doesn’t reassure us about your future.

You know, son, I don’t know if we’ll have to go through that stage one day. Your aunt did it at 18, the year your dad was born, and she managed to have a good life afterward. But if we can spare you that, we will.

It’s obvious that as parents, we’re doing everything possible to reach the miracle we’re all waiting for.

Why so much suffering for a child who did nothing wrong?
Seeing you have to take all these medications.
Seeing you do these breathing exercises that make you cry.
Seeing you get poked regularly for tests.
Seeing you have to avoid experiencing life to the fullest to protect yourself from life itself.

When I look at you, you’re so beautiful, so perfect.
And for one month of life, a bad virus and adult mistakes, your life is in danger.

I have a hard time accepting it. I don’t think I’ll ever accept it, actually.

But that’s life…

The truth is that miracles are rare.
Religion, extremely present in Brazil, doesn’t change health itself: it’s a balm that soothes fear, a hand to hold onto when everything is shaking. It can be precious for moving forward, but we also need to focus on what really affects your body.

That said, that’s my view of things. What I really want is for you to keep an open mind, to listen to different voices, and to choose the path that will do you good.

The thing is, your lungs can still grow and improve until you’re eight. After that, it’s over. What will really impact your improvement is absolutely avoiding viruses, continuing the exercises, having good nutrition, and, I hope, advances in science.

With your mom, we’re looking for studies that go in that direction. But there’s nothing today that can erase the scars in the lungs.
We know that dupilumab, in certain circumstances, helps prevent contracting new viruses, which might allow you to have a “normal” and “social” life.

We absolutely must keep raising awareness about your disease. Grandpa’s project, lescolsdusouffle.com, will help us do that in France. On that note, we’re looking for companies that want to donate prizes for the raffle!

We’re also trying to bring patients together with BOCommunity, to show that there are many of us and that we’re searching. But I sometimes get the feeling that some people don’t want to be visible. I admit I don’t understand why. The goal is so much more important.

To ease this pain I sometimes feel, I like to think about your future, about the possibilities that will open up to you. Mentally trying to find solutions. Understanding how we can contribute to giving you the longest path possible, taking into account your situation and the state of the world.

I’d like to jump into the future and see that you’re doing well, that you have a normal life.
That all this daily suffering leads to something positive.

AI will probably change everything, it’s already started.
As I write these lines, LLMs are in fashion; in your time, the models will understand the world.

Maybe they’ll find how to regenerate those scars that make your lungs so fragile.

And you, what will you do in the future?

Sometimes, when I see you playing with your piano, I listen to Il jouait du piano debout by France Gall, and the lyrics give me both sadness and hope.

I tell myself that becoming an artist or athlete, in your case, would make perfect sense.

And then, in a world where machines will do more and more things, I tell myself that artists will always remain useful. So why not? You’d have so much to share!

Here, I’m going to tell you a secret, son.

I have a friend I used to host events with, and he’s setting up a venue to host receptions.

I saw photos of him there: he was taking his son, who’s just a bit older than you, to the construction site.

I imagined celebrating our wedding anniversary there with your mom, and you bringing us the rings. I’m going to keep that image in the back of my mind.

I also have lots of more positive things to tell you. Since you turned one, you’ve been changing so much. Some really cool moments:

• You give us kisses, it’s so funny.
• Before sleeping, you hug your stuffed animals and fall asleep with them next to us.
• You say goodbye to everyone when people leave or when we hang up the phone.
• You crawl around the living room and you love toddling everywhere.
• We went back to the beach, all three of us, and what a pleasure to be able to go out together!

I love you, my little potato.

Dad.

21/04/2026

Hello, son,

Last week, the nanny wasn’t there. So for the first time since you left the hospital, the three of us found ourselves alone at home for 7 days. That had never happened since you left the hospital. Of course, the physiotherapists still come by during the day, but otherwise it was just us. And it did us good. Having someone in the house all the time, even if we understand why, is exhausting. This time, we were able to breathe a little.

On your side, you’re still making great progress with your breathing. You don’t need oxygen anymore, and you now sleep on your own in your room. And you sleep well!

But food has become the big issue.

For about two weeks now, it’s been very hard to get you to eat.
You don’t want to eat anything that looks like baby food anymore.
The only thing you accept a little is milk. But only in small amounts, and it causes reflux. So even that is difficult.

On top of that, you’re interested in what we eat. You come and pick at our plates, you nibble and spit it out. But it’s nowhere near enough calories, and you’re losing weight. And that worries us a lot…

We had an appointment with a specialist in France (Yaëlle, whom I met during the last online session). For now, she prefers to wait before considering a gastrostomy. She suggested perhaps going back to a nasal tube for a while to give you some energy and jumpstart your appetite. She also gave us a technique to desensitize you, because she thinks you have a sensitivity issue. This isn’t the first time we’ve been told this or paid specialists to help us with it. However, she gave us a technique that no one else had ever shown us. So we’re going to try it… especially since she wants to train us and give us that autonomy. And that’s cool!

Today, for every meal, your mom and I do it together. It takes about an hour each time, five times a day. It takes a huge amount of time, it makes everything else harder—work, planning—and it also creates tension…

It’s clearly the hardest part right now. And it’s really crushing our morale…

But we keep trying.

I love you, my little skinny potato…

Dad