Good evening, son,
Today, a quick update.
We are still preparing to go home. There’s a lot to organize.
Your weekend went pretty well.
Your breathing has been quite good these past few days. Sometimes you even manage to go without oxygen for a bit, which is truly wonderful to see. These are small moments that restore our hope!
However, when it comes to food, it’s still a challenge.
The morning meal usually goes quite well, but after that, it’s much more complicated. We still don’t really understand why. You have medication for reflux, for gas, and despite all that, it remains difficult.
We’re increasingly thinking it might be behavioral, that you don’t enjoy eating. We’re thinking about this a lot. We’re trying so many things. Different foods, different textures, separate, mixed. Honestly, we’ve really tried a lot, and for now, it’s still complicated. We keep searching.
The BO Community website is online!
For some time now, I’ve been working on a project called BO Community, for Bronchiolitis Obliterans Community. It’s a website I decided to create after your diagnosis was announced.
When we learned about your illness, we found ourselves facing something very difficult. We searched for information online, we looked for families going through the same thing, we looked for testimonials… and we found almost nothing. We felt very alone and were scared.
So I told myself that we needed to create a place where all these people could come together.
The idea behind this site is simple: to gather all useful information about bronchiolitis obliterans in one place. Testimonials from patients and parents, information on medications, treatments, healthcare professionals, specialized hospitals, blog articles, and useful links.
The goal is for this site to gradually become a global reference for this disease.
The primary goal is to reassure families who receive this diagnosis. To show them that they are not alone. That there are other people in their country, or elsewhere in the world, who are experiencing the same thing.
Another goal is to gradually attract healthcare professionals interested in this disease. Doctors, researchers, specialists who could share their work, knowledge, and advancements.
All of this will take time. Today, it’s only a first version of the site. But I hope it will grow over the years.
This project is also supported by the association Hope for Gabriel, which was born from your story.
I invite everyone affected by the disease to register on the site and leave their testimony. The more testimonials we have from different countries, the more we can make things happen.
Because sometimes, solutions are born simply from people meeting and sharing their experiences.
And perhaps one day, thanks to all these testimonials and encounters, researchers will find new solutions to help children like you.
And that would already be a wonderful victory. ❤️
Link to the website: https://www.bocommunity.org/
I love you, my little potato
Dad
