HOPE: A dangerous thing or the best of things

In The Shawshank Redemption, Ellis Boy “Red” Redding called hope a dangerous thing. “Hope can drive a man insane,” he said. “It has no place on the inside.”

Andy Dufresne saw it differently. “Hope is a good thing, maybe the best of things, and no good thing ever dies.”

awards-ceremony

Playing table hockey at Santi’s awards celebration.

When we found out Adriana has spinal muscular atrophy (SMA) Type 2, our world was devoid of hope. For a time, all we knew was despair.

“Life limiting.”

“Wheelchair.”

“Degenerative condition.”

“She’ll most likely never walk.”

These are the things we heard. The words that consumed us.

For a time.

I didn’t realize it then, but the thing that probably kept me going – that allowed me to function somewhat normally – was hope.

A belief – although slim – that God would clear things up for me sometime soon.

adri-lucy

Adri at her first Taekwondo class (Lucy in front of her).

A hope that everything would be fine. That Adriana would be happy.

A hope that good things were in store for her.

And the path that God illuminated for us on that horrible day has led us to wonderful signs of hope: from family, friends, teachers, neighbors, therapists, coaches, and the list goes on.

-Hope came from a child’s invitation.

-Hope came from an organization whose sole mission is HOPE.

-Hope comes from a new drug called Spinraza.

You can still be great at Taekwondo

Several months ago, one of Adri’s kindergarten classmates – little Lucy – invited Adri to participate in her Taekwondo class. Ryan and Katie invited our son Santiago.

As with any new adventure, we were a little anxious.

adri-masterscott2

Master Scott working with Adri.

Adriana is in a wheelchair.

Taekwondo means running, kicking, punching, jumping.

How’s this going to work?!

I don’t think children, like Lucy, see limitations the way I see them. I think sometimes they just want to have fun with a friend.

Master Scott, the owner at Excel Taekwondo, doesn’t see limitations either.

Or if he does, he doesn’t focus on them.

I remember, on that first day, asking him how Adri would be able to participate.adri-masterscott1

“I don’t know, I’ve never had a student in a wheelchair,” he said. “But I’m going to make it work.”

And he and his fellow instructors do just that.

They make it work.

When Master Scott calls for the kids to do jumping jacks, he paces among the students.

“Come on Adri, move those arms!”

No special treatment. No excuses. She participates in her own way.

When Adri lines up to do kicks, the instructor who’s helping her moves the bag close to her foot, so she can perform her ever-so-slight kick.

When the kids line up for obstacle courses, instead of jumping over the obstacles, Adri weaves through them in her wheelchair.

The instructors create a plan.

tkd-instructors

Adri’s instructors and HOPE providers: Mister Thomas, Mister Evan, Master Scott, Mister Jeremiah

They encourage!

They smile!

They’re positive!

They are HOPE!

And Adri, as a Little Ninja, has advanced from her white belt to her yellow/orange belt!

I don’t know how she’ll proceed through the other belts, but I have no doubt – I’m hopeful –  Master Scott will have a plan.

Adri’s friend Eva, who’s also in Taekwondo, wrote Adri a note for her graduation to yellow belt:

Dear Adriana,

Great job at graduation! I know you can’t use your legs, but that does not mean that you can’t be awesome at taekwondo!

Words of encouragement that give us hope!

HopeKids: the name says it all

The HopeKids mission seems straightforward: To restore hope and transform the lives of children with life-­threatening medical conditions, their families and the communities in which we serve.

santi-graduation

Santi graduates to yellow belt!

But fulfilling that mission seems anything but straightforward.

It must be hard to inspire hope in children and families facing cancer or SMA or cerebral palsy.

But much of HopeKids’ focus is on the future – a future event or program – instead of a focus on a present disease or condition.

We’ve attended movies, parties, and other events. All free of charge thanks to the hard-working and dedicated staff at HopeKids.

Again, the goodness of humankind shines strong!

Spinraza: the next great HOPE

In 2012, when Adri was diagnosed, her doctors expressed hope in the number of medications and treatments being developed to fight SMA.

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Adri at swim therapy

In several years, they told us, Adri may qualify to participate in clinical trials.

This actually was one of our first conscious glimmers of hope.

Even though things were very uncertain, we began praying every day that Adri would be able to receive some sort of treatment to stop, and possibly reverse, the degenerative effects of SMA.

We worked with therapists, we moved to Peru to get her better therapy, and we returned from Peru in 2015 with the HOPE that she would be accepted into a clinical trial.

She was accepted!

More hope!

They gave the trial medication a name: nusinersen — now Spinraza.

She was in the blind trial for about a year and a half.

We’ll never know if she was receiving Spinraza during the blind trial.

But as of August, she moved to the open-label trial and is definitely receiving it now.

We notice signs of strength.

adri-graduation

Adri’s graduation

She holds herself up stronger.

Gives stronger hugs.

Rolls over with greater ease.

She recently got sick with a cough. The doctors think Spinraza could have played a factor in her relatively strong recovery.

Maybe we’re just imagining it.

Maybe it’s the dangerous side of hope.

It takes time, our doctors tell us.

Time for her nerves to generate the brain signals that will tell her muscles to move.

SMA families are fighting the clock – fighting time – in keeping their children alive.

SMA Type 1 patients statistically have a life expectancy of about two years.

It’s hard to imagine from where they conjure up hope.

But perhaps they have reason to hope now.

cousins

Cousins with Uito and Uita (Grandpa and Grandma)

Just before Christmas, the FDA approved Spinraza as the first drug to treat SMA.

A number of patients who participated in the same study as Adri showed improvements in strength.

So much so that the FDA fast-tracked approval.

I hope you’ll join me in praying that the medication can quickly be administered to  children and adults who need it.

I also invite you to read Alyssa Silva’s blog.

Alyssa is a 26-year-old woman with SMA Type 1. Yes, the same SMA Type 1 that kills many children in their first few years of life.

She just started receiving Spinraza, and she’s documenting the journey in her blog.

Let HOPE inside

In The Shawshank Redemption, Red said that hope has “no place on the inside.”

Literally, he was talking about inside the prison, but the deeper meaning is that hope has no place in your heart. Your soul.

Inside.

tkd-halloween

Taekwondo party

I know when we first found out about Adri’s SMA, my heart knew nothing but fear, anger, dread.

There was no room for hope.

But for many parents dreaming for a day when their child will walk.

Or dreaming for one more birthday celebration.

Hope is sometimes the only thing left.

“Hope is a good thing, maybe the best of things, and no good thing ever dies.”

santi-award

Santi wins a “My Story” writer’s award!

 

reindeer-food

Adri and Santi spreading reindeer food

 

5 thoughts on “HOPE: A dangerous thing or the best of things

    • Happy New Year to you and your family. Prayers that this year is the year the miracle drug fulfills the “hopes” for Adri and all families waiting for a cure.

  1. Wow! That is beautiful Carlitos. I still pray every day that María de Jesús de Ágreda will intercede with Jesus for Adri and provide a miracle. Maybe this is what’s happening; at least we can hope it is. dad

    ________________________________

  2. Good to hear from you again..Happy New Year and Hope for the coming year..In Jesus. Love you all , Lucy Fletcher

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