Hello, son,
An update on the situation.
Breathing
Your breathing has been quite stable over the last few days. You need a low dose of oxygen to be comfortable.
We’re gradually trying to take you off the oxygen again.
Also, for the past few months, the hospital and the insurance company hadn’t been doing what was necessary to send a respiratory therapist on weekends.
After many complaints and requests, since it was in the contract they signed, a new person came this weekend and the connection has been quite positive. He is also an osteopath and has a slightly different, interesting approach that seems to be working.
Weight and Food
We are still battling to get you to eat.
Yesterday I weighed you, and you’ve lost weight again…
Generally, you eat three spoonfuls then refuse the rest. We alternate with spoonfuls of liquid (water, milk) to try and get you to consume more. Sometimes it works, sometimes it doesn’t.
We tried very high-calorie dishes to reach your goal of 1000 kcal per day, but it’s almost impossible. We tested foods alone, fruits, vegetables, açaí.
We are really struggling to help you gain weight. Looking at your growth charts, it is clear that since you switched from cow’s milk protein-based formula to a specialized one, your growth has slowed down drastically.
The problem is, that milk was causing you allergies.
The removal of the feeding tube in December didn’t help either.
Your illness makes you consume a lot of calories, and you don’t want to eat enough to compensate.
We’re trying everything, but it’s really difficult to manage. We want to avoid a gastrostomy, but you’re not helping us much…
Let’s keep trying!
Occupational Therapist
Following our visit to the neurologist, we followed her advice and restarted OT sessions (occupational therapy). You have 2 per week. The goal is to help you discover new textures, especially food.
Speaking of which, yesterday we followed one of her recommendations: putting sagu (small tapioca pearls) in water and letting you play with it.
You loved it and got it everywhere! And we had a good laugh.
That’s life!
We can’t wait to be able to do this in our house! And for you to enjoy the garden and go outside!
Publication in a new newspaper: Le Progrès
First of all, we thank Le Progrès for highlighting our story and the association.
We also thank your grandma and grandpa, who continue to communicate about the association to raise awareness about your rare disease and collect funds to help us.
The article was published today:
Note that there are a few errors, particularly one that says your great-grandmother from Marchampt is my mother’s mother. That’s incorrect: she is my father’s mother. It’s not very serious, but I’m noting it for you so you understand the error when you’re older and read this text.
Also, they mention an ECMO found in Salvador. There was a misunderstanding: the ECMO was indeed from Fortaleza, but a doctor on the team was from Salvador. But, it’s not very serious.
Here is the online article (paid): https://www.leprogres.fr/sante/2026/02/15/gabriel-est-atteint-d-une-maladie-rare-au-bresil-ses-grands-parents-lancent-une-cagnotte
That’s all for today.
I love you, my little potato.
Dad
