pre mature




Out having some fun

During the last week Amanda has been to 2 small birthday parties, the pool with some friends and her pulmonologist.

The Dr. was impressed with Amanda’s good health.  She joked saying she was the healthiest kid she had seen that day!  Nanny, nurses, mommy and daddy are doing a good job!

We took Amanda to a small birthday party in the pool area of our building.  She hung out with Valentina and curiously looked at all the other kids.  This Saturday rained the whole day so she stayed home, but Sunday was beautiful and we walked to a building nearby and met with some friends!  The other kids played in the pool and Amanda fell asleep after a little while.  Today was Maria Fernanda’s birthday party at an arts and crafts place and I took her.  When we arrived she was sleeping but as soon as she woke up I picked a butterfly box and painted it while she observed.

Birthday party at Murano


With Sara and her mommy

At the pool with Ana Sofia and Juanma

With Valentina Nahem

At Color me Mine for Fers' Bday Party

Watching mommy paint a butterfly, next time I will help!

With Valentina!


August is a very important month for us.  Firstly, because it is Amanda’s birthday on the 10th! She will be one year old.  I really doubted this day would come, but it is almost a reality.  Also, August is SMA awareness month worldwide.  It is our responsibility, specially during this month to spread the word about this horrible disease.  Everybody should know that 1 in 40 people unknowingly carry the SMA gene; there was SMA in my family, but most of the time there isn’t, so SMA comes without warning and could happen to anyone.  A simple blood test could tell you if you are a carrier.  Yes, most likely you will not have a child with SMA, but wouldn’t you rather know if the gene is in your family? What if you are passing this to your children and grandchildren and then end up with a baby in your family born with SMA?  I certainly wish I had known.  I want to spread the word and I want people to be aware of how common it is to be a carrier, I don’t want to see anyone I know with an SMA child…and thinking, I didn’t tell them.  So, to everyone reading this, a simple blood test could save you and your families from having an SMA child now or 50 years from now.  Help us spread the word and help us find a cure by donating to

1 comment

No ping yet

  1. Mariangela says:

    Marcela, que lindo el site de Amanda, aprendemos tanto de ella, es una niña hermosa llena de energía y que emana una paz increible. Tambien aprendemos todos de SMA, todos deberiamos hacernos el test y saber si somos portadores. Gracias por compartir todos estos momentos tan especiales.

Leave a Reply

Your email address will not be published.

* Copy this password:

* Type or paste password here:

2,547 Spam Comments Blocked so far by Spam Free Wordpress

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>