Hello, son,
A new day begins. It’s 4:40 in the morning, and I’m standing on the balcony of our apartment in Fortaleza. The city is asleep, but you’re already awake. You’re up early.
Yesterday was your birthday month, and like every month since you graduated from UTI, we celebrated with a little cake. This time, it was a carrot and chocolate cake, which we ate together on the balcony. And for the first time, we allowed ourselves to take off the mask (2 minutes) for the photo.
The nutritionist has given us new doses for your diet, which we’re going to start today. The aim is to keep you gaining weight. Last time, you didn’t put on any weight, and that obviously worried us a little.
We know that your post-infectious bronchiolitis obliterans are making you use more energy. Every breath you take requires more effort, more strength. So we’re watching every milliliter of your food!
Yesterday, I made an important decision: to make public everything I’ve written about you.
Until now, it’s been our secret garden, protected from search engines. But I think the world needs to know.
I want other parents, other families going through the same ordeal, to be able to find information, comfort and guidance.
Yesterday, I also spoke with a mom from Madrid on Instagram whose 5-year-old child has the same illness as you. This reminded me of the idea to create a website dedicated to this disease.
It’s under construction, but here’s the URL: https://bocommunity.org/
I will list the various specialists, known cases worldwide, treatments, and testimonials there.
The idea is to build a global community, so that no one crosses this desert alone. And above all, so that we’re among the first to know if there’s a new treatment, a new drug, a new hope.
It’ll take time, but it’ll be useful. Not just for you, but for all the little warriors like you.
On that note, I’ll come see you quickly because you seem to be crying, and I think Nadine needs help.
See you tomorrow, my little hero.
I love you
Dad
