A glimpse of Adri’s battle against SMA

The other day, I was talking to my friend Joanne from Colorado.

We worked together when I first moved to Denver in 1998, and we remain friends.

She asked me to describe our home and our neighborhood here in Peru so she could have a sense of our life now.

She told me that she pictured us living in an adobe house with lots of open space.

I then began to explain the chaos that is Lima; 8-10 million people crammed into about 1,000 square miles (about 40 miles north to south and 25 miles east to west).

After I tried describing our home and neighborhood,  Joanne suggested I post more pictures.

I then realized many of you might enjoy seeing a little bit of our lives instead of just reading about it.

So, here goes.

Unique battles, common hopes

Every child stricken with spinal muscular atrophy (SMA) has a unique battle.

Some need a tube to eat or breathe…….or both.

Some need help maintaining a seated position.

Others can’t sit at all.

Some need help holding their head up straight.

Their brilliant minds are trapped in a weak body that’s getting — or will eventually get —  weaker.

What’s not unique is every victim’s and every family’s hope for a cure.

A treatment within the next few years that will give every patient greater strength and mobility, the ability to experience more out of a longer life, and quite literally, the chance to hold their heads up high.

Every Wednesday and Friday morning, we take Adriana to physical therapy at an institute called Arie, which we were able to find through Gaby’s friend.

Each session is a race against the clock to find a cure. To keep her body and her muscles moving so that when we have a treatment, she has a stronger starting point to build her body back up.

Some children face tougher battles than Adri, and others face easier ones.

All I know is that all these kids are much stronger than I’ll every be.

The clips

Here you’ll see, through a series of video clips, a little bit of Adri’s battle.

I tried to keep each video under 30 seconds.

The whole process takes a couple of hours, round trip, but I know you don’t have time to witness all of it in one sitting.

But hopefully you’ll enjoy seeing a few clips of how Adriana is progressing.

Her therapists are happy with her progress, and of course, so are we!

Enjoy!

GETTING THERE: These first clips show you our commute to therapy:

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GETTING READY: These next clips show Gaby getting Adri ready for therapy.

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THE THERAPY: Therapist Zeida takes Adri through various exercises designed to help her maintain her strength.

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6 thoughts on “A glimpse of Adri’s battle against SMA

  1. Thanks for sharing Carlos I always love reading your blog to see how you and the family are doing. Tell Gabby I said hi

    anna

  2. Carlos – thank you so much for your posts. I love to keep up with how you are all doing and these videos of Adri in therapy are wonderful. It warms my heart to see her growing up so fast and doing so well! Love to you all…and by the way, you are a fantastic writer… 🙂

    • Thanks, Gillian! And, thank you for taking the time to follow our blog and drop us a line. Although we’re doing well here in Lima, we miss all our friends and family we left behind. Hopefully we can visit soon and see everyone. Hope you and your family are doing well!

  3. Thanks for sharing. Ari is so adorable. She reminds me of one of my granddaughters when she was her age. She’s 25 now. Our prayers are with you and yours.
    Love,
    Lucy

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