I’m not perfect; I can’t walk

I’ve been thinking a lot lately about the word “perfect.”

I never realized how often I use it – especially at work:IMG_2383

  • “How does this Web page look?”
    “Perfect, nice job!”
  • “I should be able to complete that by Monday.”
    “Perfect, thanks!”

What got me thinking about it was our recent summer vacation to Florida. The kids’ first Disney trip.

We were hoping for perfection. And we got it — almost.

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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.

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Time to Shine

breakfast

First day of school breakfast

Adriana’s preschool teacher, Teacher Mary, sent her a surprise note this week – Adri’s first week at her new kindergarten.

“It’s your time to shine,” she wrote.

Adri’s preschool teachers know Adri’s capacity for learning.

Her strong personality and will.

Adri’s new kindergarten teachers have only had a couple of days to get to know her.

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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

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Merida’s Very Happy Halloween

The stares came.

I didn’t have to see them.

I felt them, like when you’re on a crowded bus and a fellow rider brushes against you.

The stares were slightly annoying, but unavoidable.

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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!

 

Take a moment to enjoy CHRISTmas

Alonzo distributes gifts

A thankful child receives his gift!

A vicious disease is no match for the human spirit.

The disease may tear a body apart.

It may extinguish a life that’s just begun. Or a life that’s seen a thousand sunsets.

But it will never extinguish the human capacity for kindness, or a child’s smile, or a parent’s undying love.

Santiago distributes gifts

Santiago distributing gifts

Anyone suffering from cancer, I believe, has the right to be angry. To ask the question, “why me?”

And although cancer is beatable, it is an unfair battle.

The medicines and treatments doctors use have the potential to do serious damage to other parts of the body.

And, it’s particularly unfair when the disease’s victim is an innocent child.

Adri distributing gifts

Adriana helping distribute gifts

We recently visited a center here in Lima called la Fundacion Peruana de Cancer.

The foundation’s mission is to raise the standards of care and treatment of cancer patients in Peru.

This Christmas, a group of our friends got together to donate gifts and snacks to the cancer patients currently under the foundation’s care.

Family distributing gifts

Tia Susy, cousin Nicolas and Adri with a new friend.

A family friend took the lead in coordinating the effort, and a few of us visited the center to distribute presents and spend a little time with the families currently living there.

We took Santiago and Adriana along so they could enjoy the experience and hopefully learn the important lesson of giving.

You know, we receive many reminders on Facebook or other social media to keep “Christ” in “Christmas”.

It doesn’t take much, really.

A toy, a piece of cake or some candy. A smile, a hug or a kiss.

Santi distibuting hugs

Hugs all around

A prayer for someone in need.

Christmas will come and go.

But Christ is always here.

Just take a step back, breathe and look into the eyes of your child or your parents or your friends……and you’ll see Him.

Have a wonderful Christmas everyone!

Family and friends

Alonzo, Rocio, Sister Lucia, Susy, Nicolas, Adri and Santi.

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Happy Birthday, Santiago!

On November 24, 2008, Santiago Jesus Gomez entered our lives at 5:43 a.m.

It was a Monday.

This Monday morning, in 2014, Gaby and I were remembering bits and pieces of that day, six years ago.

At 7:43 this morning (or 5:43 a.m. Mountain time), Santi entered our room with a smile on his face.

Ok, it was give or take a few minutes, but it was almost the exact time he entered the world six years ago.

He may not have been smiling back then. In fact if I recall correctly, he was pretty irate.

But he was smiling today; excited about the party he would be getting at school. The presents he’d soon be receiving.

I watched him today, interacting with his friends.

I watched him include his little sister in the activities.

I watched him give up his chair during “musical chairs” to his friend Alejandro so Alejandro wouldn’t lose.

I watched him lead a game of Simon Says.

I watched him.

And I wondered.

What did I do to deserve such a gift?

But perhaps a more appropriate question is: what will I do to continue to deserve it?

Six years ago, God filled our lives with immeasurable joy and equally immeasurable love.

I must work everyday to earn it.

But if all it takes is to love my son, then the task is already complete.

Because loving you, Santi, is a done deal.

Happy birthday!

Preparing the classroom

Preparing the classroom.

Mom and Adri

Mom and Adri waiting for Santi.

Santi's entrance.

Santi’s entrance.

Brother and sister.

Brother and sister.

The girls

The girls of the class.

Santi with his teachers, and Alejandro on the left.

Santi with his teachers, Angela and Yadira, and Alejandro on the left.

Adriana and Adrian.

Adriana and Adrian.

Rodrigo.

Gift from Rodrigo.

Carlos

Gift from Carlos

Adrian

Gift from Adrian.

Isabella

Gift from Isabella

Sylvanna

Gift from Sylvanna

Natalia

Gift from Natalia

Adri

Adri joined the party.

Santi

Santi hands out gifts

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Día de la Canción Criolla

While our friends and family in the states celebrate Halloween today, Santiago and Adriana will be celebrating Día de la Canción Criolla (Day of the Creole Song) at school.

They and their classmates are dressed in traditional clothing as they enjoy a style of music that dates back to colonial times.

Peru celebrates its traditional music and dance in restaurants and parks; on sidewalks and on the beach; in the mountains and the jungle.

Here are few pictures of the kids before they headed off to school.

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Tonight, we’ll break out the Halloween costumes!

Be safe, everyone!