Hello, son,
Today is January 2nd.
This morning, we changed your oxygen catheter.
And we followed your physiotherapist’s advice by removing it for 2.5 hours.
And guess what?
You did so well!
We are so happy!
You are so, so strong, and it makes us incredibly happy to see you progressing like this!
Despite everything, we regularly monitor your heart rate and saturation, and we remain very vigilant, following the physical therapist’s recommendations.
In the coming months, you’ll have a battery of tests. I’ll share all of that here.
Anyway, I wanted to tell you about New Year’s Eve.
Your mom and I spent New Year’s Eve 2025–2026 together.
Just the two of us.
We had someone with us to help until 7 PM, then once you were asleep, we had a small buffet:
Sausage and cheese that Grandpa and Grandma had left.
On my part, I had a glass of wine also left by Grandpa and Grandma.
Your mom hasn’t had alcohol since the hospital, so she toasted with a glass of soda.
We dressed up like for a real New Year’s Eve in Brazil. All in white.
We decided we wanted to do things properly.
To celebrate this year to say goodbye to it, but also to say thank you.
Because we survived.
All three of us.
We are here.
Together.
So we celebrated it properly, in our own way.
Then we went to sleep next to you, on the floor at 9 PM.
We spent midnight by your side. And it was perfect!
In the end, all three of us slept very poorly. Some celebration, huh? Haha
Your mom had remote issues to deal with. As often happens, the electrical grids in the Préa region are very poor and heavily strained during New Year’s, and the situation at her work was critical.
And outside, it was a party. Shouts, cars, firecrackers, fireworks.
Everything needed to wake a baby right up!
But that’s all right. We spent that night together. And it was perfect!
I also wanted to revisit an important point.
On the 31st, I told myself I wanted to close out this year by making a statement.
I wanted to engrave 2025 in stone so we could set it aside and move on to 2026, leaving 2025 in the archives.
For that, I decided to make a video.
You know, and I think you’ll realize it as you grow up.
Your dad loves to create things. And in fact, for a long time, I made vlogs of my travels.
Deep down, I hope you won’t remember anything from 2025 and all that you endured.
But I want you to be able to watch this video one day. And say to yourself, “Wow, I went through that.”
In life, there are difficult moments.
And what makes us strong is our ability to get through them.
To gain experience from them and to capitalize on that experience in the future.
Even though I wish you the best for your entire life, you will probably, like everyone else, have other difficult moments. Moments when you’ll say, “I can’t do it.” Where everything will seem complicated.
At that moment, I want you to remember that you’ve already been through much worse.
You went through something no one should ever have to go through.
Something that many people wouldn’t have been able to bear.
And you did it.
And that strength is within you forever!
You can always count on it.
You fought against death. And you survived!
Remember that, son!
When you have a just intention, when you want to do good, when you want to bring value to the world, nothing can stop you.
Nothing!
I also want to clarify something important.
When sharing our content, we sometimes feel a certain discomfort with some people about exposing our personal life.
I told you that when we did it.
We thought about this a lot. It’s not a spur-of-the-moment decision.
Originally, exposing a child on social media was not my thing at all.
Even though personally, I have no problem exposing myself.
What we want above all is to highlight your rare disease.
Because by doing so, we’ll be on the front lines to find solutions.
We also want to be visible when people are looking for information, testimonials, and hope regarding this disease.
I’m also going to create another website dedicated to this disease.
And I think I’ll use it to teach a course to my online students. (Killing two birds with one stone).
A site that will also gather stories from other families.
Because with your mom, when we received the diagnosis and looked for information, we suffered immensely.
Very little information. Very few prospects.
We want to show the world that there are families who make it through.
Who manage to build an almost normal life despite everything.
And then, from a more pragmatic perspective, I don’t think it’s a bad idea either.
We’re showing a part of our lives. Not our entire lives. And this will open many doors for us.
And as I’ve already told you, at any point, if one of the three of us decides to stop, we stop.
We delete everything. No debate. No regrets.
And if some people don’t understand that. That’s okay.
We live for ourselves. We don’t live for others.
Finally, I also want to tell you something important about this video.
I deliberately chose not to show the most negative things we saw at the hospital.
Even though I have photos of almost everything…
I also deliberately chose not to highlight all the people who helped us along the way.
The healthcare professionals. The people who are with you every day. Those who help us daily at home.
I didn’t want to expose them on social media without their permission.
But know one thing.
Without these people, you wouldn’t have made the progress you have today.
They give you so much love, every day.
Their role is fundamental!
I hope you’ll be able to meet them when you’re a little older.
I don’t know where we’ll be living at that time, but I hope you can maintain a connection with them.
They hold a crucial place in your life.
I’ll stop here for today.
In the coming days, I’ll publish texts that Grandma Michelle and Grandpa Robert wrote for you when they returned to France.
I’m leaving the video just below for those who haven’t seen it yet.
2026 will be a great year!
I love you
Dad
