From Double-Blind to Eyes Wide Open

af deck2Almost a year and a half ago, Adriana started her Ionis clinical trial at Children’s Hospital.

Since then, she’s received injections of nusinersen, a promising new drug that could cure spinal muscular atrophy (SMA), or at least stop or delay its degenerative effects.

Actually, we’re not sure if she received the injections.

We’ll never be sure.

It was a double-blind trial where only certain individuals know if she received it.

What we do know is that we haven’t noticed any regression in Adriana’s strength since she started the trial!

Even better news came out this month!

Due to the drug’s success in clinical trials in infants, the manufacturers are moving to what we pray will be a fast FDA approval of the medication!

Here’s another thing we know

adri grad

Preschool graduation walk

Over the past year and a half since we returned from Peru, Adriana has thrived!

She plays with the her big brother, Santi, in her new playhouse in the backyard.

She plays with the neighbor kids, Giana and Anisa, Jayden and Jordan, and little Jackson.

She swims in the summer — probably her favorite thing to do.

adri teachers

With teachers Nicky and Mary

She went to preschool at Fletcher Miller, where she had the most incredible team of teachers and therapists.

She goes to horse, music, and physical therapy.

She goes to the zoo.

She goes to the movies.

She goes to church and to religious education classes.

adri grad 3

Just some of Adri’s incredible team at Fletcher

She dresses up for Halloween.

She plays in the little sand pool in the backyard.

She chases rabbits, and squirrels, and prairie dogs.

She feeds herself – usually with some prodding. Unless it’s Fettucine Alfredo from the Olive Garden, in which case we can’t get her to stop eating.

She loves when company comes over for 4th of July or a weekend BBQ or party…………

…………..and I could go on and on.

adri sheilaThe point is, she’s thriving as a 5-year-old child!

Not a 5-year-old child with SMA, but a child.

Riding in her wheelchair, she gets the stares and the questions from kids and adults, but she takes it in stride.

I honestly don’t know if she even notices.

She gets along with her strong personality.

adri mike 2

With teacher Mike

Just recently, she met some new kids at Tony and Nancy’s pool.

She came right out and told them:

“I’m five.

I have SMA.

I don’t walk.

I use a wheelchair.”

adri grad 5Now let’s go play.

She then proceeded to direct them on the correct way to play with her in the pool:

“Come here to the steps.

Do this!

Do that!”

As her preschool teacher Nicki describes it: Adriana will tell you what to do and what she wants.

There’s no gray area.

adri grad 4

With Athena

She’s strong!

Next up: Kindergarten and Open Label Trial

Later this month, Adriana faces two big challenges.

She begins kindergarten at our neighborhood school, Leawood, where her big brother, Santiago, goes.

Her preschool, Fletcher Miller, provides education primarily for children with cognitive disabilities.

adri parkAnd since Adri’s needs are solely physical, she’s transferring to Leawood.

We’re excited.

We’re nervous.

At Fletcher, Adri was surrounded by children with special needs.

At Leawood, very few have special needs.

How will the kids treat her?

Will they laugh at her? Exclude her?

horse1 copyWill they support her? Play with her?

My hunch is all of the above.

We’ve met with the Leawood staff, and we know Adri’s kindergarten teacher, Mrs. Rombach. She was Santiago’s teacher.

They are all very excited to have Adriana join the Leawood family!

Their reaction is the reaction we see often from those who meet Adriana and learn about our situation.

What God intended and what is fundamentally at the core of every individual….those three things: faith, hope and love.

ambulance

Ambulance transfer to Children’s Hospital

The greatest of which is love.

But, in a close second is HOPE.

The hope that extends to Adriana’s other big challenge.

The beginning of the open-label trial at Children’s – the week after she starts school.

It is an extension of the trial she just finished.

Only now, she will definitely receive the medication.

You can imagine the hope we have.

back home

Home after 3 days at the hospital

The hope that she’ll quickly build strength.

That she’ll be able to bring herself to a seated position.

That when a child accidentally bumps her, she’ll be able to keep her head upright and not fall over.

That she’ll build muscle to support her frame.

That her cough grows stronger.

That her lungs grow stronger.

That when we hold her to stand, she’ll begin to stand on her own.

To understand how it feels.

snowman

Santi builds a snowman for Adri while she was at the hospital

How it feels when your legs can carry your own weight.

We hope her body will finally listen to what her brain has been telling it to do for a long time.

To stand on its own.

To take a step.

To take two or three.

To walk.

To run.

To jump.

To get tired from running and jumping too much.

To run to our bed when she has a nightmare and needs to cry in our arms.

new years

Celebrating New Year’s

We hope!

And ask for your prayers!

Our Third Walk-n-Roll

On September 10, we’ll gather again with other SMA families for Colorado’s annual Walk-n-Roll Fundraiser.

Although it’s difficult sometimes to see others struggling with SMA, and it’s so sad to see pictures in memory of children who’ve lost their battle with SMA, the event has been uplifting.

As always, we hope those of you in town can join us!

The love and support outshines every sad thought and brings this world ever closer to a cure.

As I mentioned before, one promising drug is near approval.

stander

Filling her piggy bank

And there are a dozen more in some stage of development.

Every dollar raised keeps hope alive.

You can visit the Team Adri page to donate or join team, or for more information.

We’ll do our best to keep you updated on Adriana’s progress.

And as always, we ask for your prayers!

 

 

 

hospital

angel fire lake

adri mia

skis

adri turtle

adri luna

adri mama mami

af deck

casita

washing Luna

in bed

horse1

horse2

new years family

IMG_6953

8 thoughts on “From Double-Blind to Eyes Wide Open

  1. Good to hear about you Adriana. Our prayers are with you and hope the new drugs help.
    Love, tio carlos & tia myrna

  2. It was so good to hear about you and family again. How exciting the news about the new meds that brings such hope for Adri. The photos are delicious. God is good. Love you all,
    Lucy Fletcher

  3. It was wonderful to hear from you and your family. I’m excited about the new medicine and will definitely pray that this is the answer to prayers for your family and all those needing it.
    Loved seeing the pictures. The kids have sure grown.
    Wishing both the kids a wonderful school year.
    Stella

  4. Hi, Carlos, Gaby, Sant and Adri! I’m SO HAPPY to hear that you, Adri, are doing great! It’s a blessing, Carlos and Gaby, to actually know that she’ll be receiving the injections without a shadow of a doubt. She’s a little spitfire and a ray of sunshine; a natural leader and simply PRETTY DARN AWESOME! Love you, all!🙆💟

  5. Thanks for the update. Praying for a good result and knowing God’s love is surrounding you and family always.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s