Am I going to walk?

Backyard leaves

Rolling in the backyard leaves

I’m not sure what we’re going to do on Adriana’s fifth birthday.

We’ll have the cake and presents, of course.

The get together with friends.

But, I don’t know what we’ll do if she asks the question again.

“Am I going to walk when I’m 5?” Continue reading

Lima Back to Littleton: Our SMA Journey Continues

Adri shows off her bracelet

We’re blessed with some wonderful new neighbors! Our neighbor, Jason, made Adri this bracelet.

In the summer of 2013, we began a journey.

Began a new life.

Traveled thousands of miles south to a new home in Lima Peru.

Filled with hope.

And a fair amount of fear.

There was no treatment for our daughter Adriana, who, a year prior to our move, was diagnosed with spinal muscular atrophy (SMA).

No medication to fight the disease.

Just some drugs we had heard of that were in different stages of development.

Backyard swing

We’re blessed with a beautiful new home! Santi and Adri playing in the backyard.

The doctors tried to convince us there was hope.

But they were unsuccessful…….in the beginning.

The only treatment we could give Adriana was physical therapy.

Our trips to Lima prior to our decision to move there made us realize that the best thing we could do for her, at the time, was move to Peru where her response to physical therapy had been very positive.

Our goal was to keep her as strong as possible until the time came when she may qualify to participate in one of the clinical drug trials that was advancing the fastest.

The time finally came at the beginning of the year, when our journey took a 180-degree turn.

To Children's Hospital

On our way to the initial screening for the ISIS-SMNrx drug trial. Our prayers were answered, and Adri was accepted.

Right back to Colorado where Children’s Hospital was chosen as a location to administer the third phase of the ISIS SMN-rx drug trial.

It’s been quite a while since I’ve written in our blog.

As you can imagine, the last seven months has been a non-stop adventure.

Back to familiar surroundings.

But still facing many unknowns in this latest leg of our journey.

Adriana was accepted into the clinical drug trial and completed her first treatment in May. She had another in June and will complete her third this week.

She’s doing very well! Your prayers and the Lord’s guidance have made it so.

It’s hard to tell if she’s receiving the medication.

It’s a double blind study, which means not even Adriana’s doctors know if she’s receiving the medicine.

For each procedure, she’s wheeled into the room where only a handful of individuals are present (the anesthetist, the person administering the drug, a nurse or two).

Adriana’s either receiving the medication through an injection in her lower spine.

Or, they give her a needle prick at the base of her spine.

We can see the dot on her back.

We just don’t know if it’s a full injection of medication or a prick.

That’s the way the clinical trials work.

Some patients receive the drug.

Some patients are part of the placebo group.

There are times when we think we see increased strength in Adri, which leads us to believe she IS receiving the drug.

But, we won’t know for sure for a while.

Of course, I have many details to share about our journey back, which I hope to do with this same blog that I started when we moved to Peru.

But with this first blog post, I want to share an event that has motivated me to start sharing our story again.

Very recently, the SMA community lost a little girl.

A little girl who was – and continues to be – a strong source of hope for many.

Her life spoke volumes when it came to perseverance in the midst of insurmountable obstacles.

Yet, she never spoke a word in her seven years of life.

Gwendolyn Strong was diagnosed with SMA, Type 1 when she was a baby. The doctors told her parents she wouldn’t live long.

Perhaps two years.

All parents of SMA Type 1 patients receive that diagnosis.

This past July 25, Gwendolyn died. She lost her SMA battle.

Gwendolyn’s parent, Bill and Victoria Strong, created a foundation in their daughter’s name back when she was first diagnosed.

They devoted their lives to SMA awareness and the search for a cure.

They are heroes, like their daughter Gwendolyn.

They share their SMA story.

They shared how they spent the last few moments with Gwendolyn, before she took her last breath. How they told her it was o.k. to let go.

Adri and Luna

At home with Luna

The experience of watching their child take her last breath was heartbreaking to read. Yet, the grace with which Gwendolyn lived her life, and the grace with which she left this world are truly inspirational and give us, as SMA parents, hope that a cure will soon be found.

So, I feel I should continue to share our story, too.

Not because it will have the same impact that the Strong family has had on so many.

But because it’s only by sharing that we can provide hope for others – whether it’s one person or one million.

Gwendolyn lived by the motto: Never Give Up.

It’s what allowed her to live years longer than the doctors thought she would.

It’s what allows her parents to be such strong advocates for SMA awareness.

And, it’s what allows us to wake up every morning and believe that a cure is not that many more mornings away.

Our Littleton to Lima journey has ended.

Our Lima to Littleton journey has just begun.

It’s good to be back!

 

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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