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Baltasar, born to explore

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© from the text Baltasar, born to explore: Eva Latonda 2019 © from the illustrations: Maru García, 2019

About Rare Diseases (RD)

Rare diseases are a set of various symptoms that are very uncommon.

Imagine that! A rare disease is considered to be one that affects one or two people out of every thousand.

There are loads of varieties and very little is known about them, which is why we prefer to say that it's not the person who is rare, the disease.

Since there is power in numbers, the doctors, parents and the patients themselves join forces to find solutions that improve the lives of people with uncommon diseases.

The diagnosis is the most important aspect, which is why more research is needed.

Baltasar, who has a rare disease that has not yet been identified, has decided to become a researcher to learn more and to find good treatments for all of them.

Small but tough,

you're going to love Baltasar.

I like the sound of the sea.

The waves come and go. How do they do that? I chase them and then they chase me. However much I run, they lick at my ankles and tickle my feet.

I like wet sand but dry sand gives me the shivers.

Mum makes me walk on it because of something to do with a motor…bike?

I live in a small village next to the sea and, when I get close to the shore, my grandma always says:

"Balta, only put your feet in … Just in case… ”

“Justin Case” must be a scaredy-cat

When we go to the city, I go to the hospital. Everything is white there. The walls, the doctors' coats, the sheets, the tubes, teeth, hair, even my favourite doctor, who's called Whitey...

Maybe they were painted by a cloud??

At school there are colours.

My teacher, Marisa, gives me big blocks.

I stack them up. I jump over the skipping rope, I play with huge balls and I roll around on the floor.

I must have a nice smile because people like to make me laugh.

Grown-ups are weird.

They are so serious. They forget to look look at things; the poor little ant trying to carry a huge breadcrumb; the wind that blewthat leaf up into the air. Where is it taking it?

They don't see the pretty colourful fish in the water…

Grandma says that I ask a lot of questions. I'm just curious. That's why I want to be smart like Blanca Whitey when I'm older, and find out what's wrong with me.

They say that I've got a rare disease. Is that why my fingers aren't fully grown? The doctors don't know what I've got. They're looking for more cases like mine to come up with a diagnosis.

I find it difficult to get my words out, and I don't walk the same as Luisma or Allison (my very best friends).

I've got a huge scar here from an operation I had just after I was born. And when I breathe it feels like someone is pinching my heart.

We left the beach early this afternoon, even though the waves were sooo cool,, because it was Exploring Time (I gave it that name).

Once a week, my parents and I get together with my teacher and the doctors (we do it on the computer, and I can see them and everything).

We talk about my progress.

It always makes my parents feel better because we are slowly moving forwards.

I like to see them smile. I wonder if they know how much I love them? I'm sure they do because they squish me with such warm hugs that I just melt.

There's an island near my beach. My dad, who knows loads of stuff, says that there are remains from Roman ships there. I'd love to see them. Do you think they could get them working again? I think so.

They just need to find some way to get them back up; my dad will figure something out. Then we would need to fix the holes.

Mum's got some great super glue. And the last thing would be to put the sails on, and my grandma's got loads of material that I'm going to ask her for.

Then they'll sail again.

Like me. I won't just sail with dad like those Romans did.

I'll also be a discoverer of "new lands",where kids with rare diseases can find great treasures.

Not even the storms, the waves, the lightening or the mermaids will be able to stop me.

Because I'm Baltasar, born to explore……


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