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.

Continue reading

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

Continue reading

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 very holy October

Adri, Santi and mom at Las Nazarenas

At the Sanctuary Las Nazarenas, the main gathering place for El Senor de los Milagros. Adri in her purple robe, the main color of the celebration.

October is a very important month in Peru for the Catholic faithful. The entire month, the country celebrates El Senor de los Milagros (Lord of Miracles).

For me, the stage was set early in October when we were at a birthday gathering in Pachacamac, about 45 minutes south of where we live in Lima.

Gaby’s family has some property there, which they use on the weekends for occasional get togethers.

It was a typical celebration. Nothing out of the ordinary. Until a gentleman approached me as I was carrying Adriana around the property.

I’d met him before, and we’ve held brief conversations at other gatherings. He’s the father of my sister-in-law’s good friend.

St. Jude

St. Jude prayer card

Fairly recently, he was diagnosed with stomach cancer, and he’s been through a difficult time, as you can imagine. I would guess he’s in his mid-70’s.

Adri and I were off by ourselves, looking for snails or roly-polies or something like that, when he approached us.

He asked me if I knew who St. Jude Thaddeus was.

Being Catholic, I felt I should know. But there was no way I was going to lie, for fear of being struck down by lightning.

He proceeded to tell me that St. Jude is the saint we pray to in desperate situations. He was one of the 12 apostles.

He was martyred, suffering death by decapitation for his belief in Christ.

Jude2He told me I should pray to St. Jude every day. He pulled a laminated prayer card out of his wallet, which he gave to me as a gift.

He didn’t mention Adriana’s disease. He never has, to me anyway.

But, I knew what he was talking about.

As a man suffering from stomach cancer, I certainly understand his devotion to St. Jude. Especially during his difficult treatments.

I know from Gaby’s cancer, things can and do feel desperate and hopeless.

His faith was evident, as he touched Adri’s legs and her head with compassion and a smile crossed his face.

So, I pray.

Although I don’t necessarily view Adri’s condition as desperate, compared to others with more serious conditions, I still pray.

Perhaps selfishly.

Senor de Los Milagros

Sanctuary of Las Nazarenas

Sanctuary of Las Nazarenas

On October 24, we visited the Sanctuary of Las Nazarenas in downtown Lima. A special mass was held for patients of Arie, a facility where Adriana receives physical therapy.

A mother whose child also gets therapy there invited us to attend.

All month, you can go to services throughout the day to pray to Christ, the Lord of Miracles. It’s really quite encouraging and powerful to see so many people joined in prayer.

We were able to take Adri and Santi right up to the large statue at the front of the church to say our prayer and let them touch the statue with their little hands.

Senor de los Milagros

Adriana and mom at the foot of the Lord of Miracles.

Celebration of the Mass

Crowds fill the church

Many parishes have their own smaller statues that they use during processions in their own districts.

Last year, I was honored to be able to help carry the statue for a short distance down our street.

I thought of Adriana.

I thought of Christ carrying the cross to his own crucifixion.

And, I plan to do the same this week when the procession passes our house again.

I’ll pray for a cure. I’ll pray for children with SMA.

I’ll pray for a miracle.

Dad and Santi

Dad and Santi in last year’s procession down our street

 

Only God could train a humpback

Months ago, I wrote about a spiritual experience I had here in Peru.

We were at a party at a friend’s beach house near Lima.

The Pacific Ocean, Mancora

Mancora: a view of the Pacific from our hotel, Los Corales.

It was at a time when I was really questioning our move to this country and doubting whether it was a good decision.

Looking out at the Pacific Ocean, I felt a sense of peace.

God’s peace.

The pisco I was drinking probably contributed to my peace-like state, but there was definitely something more.

I was surrounded by people simply enjoying each other’s company. Enjoying the moment.

Causa

Special anniversary dish (Causa) from the staff at Los Corales.

It was then I realized that if we spend this journey called life regretting the past or fearing the future (or both), we will have missed out on what’s important.

God’s gift of family, friendship and human kindness.

God’s been working on his tan

On September 4, Gaby and I celebrated our 10th wedding anniversary.

whale watching tour

On board our whale-watching boat

As a gift, our family here in Lima took care of the kids while we snuck away for a long weekend.

We spent several days in Mancora, a beach resort in northern Peru.  We had gone there back in February and had fallen in love with the place.

We stayed at the same hotel, Los Corales, where Iman (the head waiter) and Sylvia (the manager) took care of us.

It’s slow season, and the place was practically deserted.

Mancora Peru: dolphins swimming along boat

Mancora Peru: dolphins swimming along boat

It’s also whale-watching season, and we took a tour that didn’t disappoint.

We saw dolphins, sea lions, turtles and, of course, whales.

This time, it was Gaby’s turn for a spiritual experience on the Pacific.

He’s always listening

One of the fixtures of these resort beaches are the vendors that come up to you selling jewelry, pottery, hats, sunglasses, clothing, massages and ice cream…….not necessarily in that order.

IMG_1563Our first day there, a psychic came up to Gaby offering her a tarot card reading.

She was tempted.

She wanted to know if our Adri would ever walk.

The next morning, as Gaby was running along the beach, she felt deep in her heart that it was the devil tempting her into believing that anyone, other than God, knew the answer to that question.

Adri, Santi and Diego in Pachacamac

The kids didn’t miss us a bit. Adri and Santi with cousin Diego in Pachacamac.

Will Adriana ever walk?

The doctors don’t know the answer.

We don’t know the answer.

Gaby realized — at that moment on the beach — that she need only trust in God…..not a psychic.

“God has always provided,” Gaby told me. “What reason do I have not to trust Him anymore.”

As she continued her run, Gaby decided to ask God if she could see another whale.

A whale then appeared about 100 yards out!

Mancora Peru: whale breaching

Mancora Peru: whale breaching

She then asked God to make it breach.

Just then, it jumped out of the water!

Finally, she asked for Adriana to walk.

She knows that answer will come in time.

Gaby came to that peaceful realization running along the Pacific. That same ocean that brought me peace months ago.

I got help from a little pisco.

Gaby just needed a whale.

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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Our hope is for just one step; theirs is for one more breath

The National Institutes of Health (NIH) says Spinal Muscular Atrophy (SMA) is the disease closest to treatment out of hundreds of neurological disorders. And, dozens of leading scientists state that, with appropriate funding, there will be an effective therapy for SMA in less than five years.

Wonderful news, of course!

Problem is, many innocent babies fighting the disease are measuring their time in months.

Sadly, even weeks or days.

This reality hit me hard when I read an update on one of the more promising clinical trials by Isis pharmaceuticals, a company currently testing a drug in SMA infants and children.

Two bullet points in a press release made me realize the pain many families with SMA Type 1 children are going through as they deal with this horrible disease:

  • [Of seven infants], five are alive without the need for permanent ventilation. The two infants who have had an event (one death and one permanent ventilation) each experienced the event in connection with pneumonia.
  • Three of the infants…remain on study and had not yet reached their third induction dose on April 7. One infant died prior to receiving a third induction dose.

I found myself reading these lines over an over again.

My chest tightened slightly and my breathing accelerated as my eyes passed over the words: “one death” and “one infant died.”

Genetics were a curse……and a blessing

IMG_0328

Trying to step toward daddy.

It’s difficult for me to get my head around the genetics of SMA.

Gaby and I gave our daughter the disease but it’s not the most severe, Type 1 form.

I don’t know exactly how our Adriana ended up with enough copies of the SMN2 gene to avoid a Type 1 diagnosis.

As a Type 2 SMA child, Adri’s muscles are weak and she can’t walk yet. But, there’s so much she can do.

She can roll on her own, throw a ball, feed herself (when we push her) and play games on her iPad.

She doesn’t need a breathing or feeding tube.

It’s because of this that we ask God to give Adri the strength to take a step, instead of to take a breath.

It’s because of this that, at this moment, I can hear her in the other room singing “He’s a Tramp,” as she and Santiago watch Lady and the Tramp.

IMG_0459

Strong arms lifting her lollipop.

It’s because of this that Adri is not a bullet point in a press release.

Love now, for there may not be a tomorrow

I remember starting to research SMA when Adri was diagnosed.

Our doctors directed us to the Families of SMA website where we found volumes of information.

Sometimes more than we wanted to know.

The organization puts out a quarterly news magazine, and each issue features a Loving Memories section. Although the stories made me cry, I couldn’t stop reading about the children who lost their lives to SMA.

I was amazed at the young couples smiling with their babies, knowing they would most likely lose them to the disease months, or even weeks, later.

I couldn’t understand it…………then.

IMG_0466

Strong arms holding Blacky!

But, I understand it now.

Their joy came not from thoughts of the future, or of what successes or failures their child would experience in life.

It came from living in the now.

Having the opportunity to love a creature they brought into this world, if only for a moment.

Experiencing the joy of loving something unconditionally and without boundaries.

In a strange way, maybe it’s a gift to live under such circumstances.

Of course, anyone faced with losing a child would much rather have the gift of a long life with that child.

Santi and Adri sleeping

Brother and sister at peace together!

But when you realize time is short before God calls your child home, you tend to love deeper and forgive easier.

Doctors have given us high hopes for our Adriana.

But, I’ve heard too many stories of how just one illness can bring an SMA child so close to death.

It doesn’t occupy my every thought, but I do think about it.

That’s when I do my best to offer up to God the hatred and silly worries that too often occupy my life.

And instead, I try to focus on what I should be focused on: cherishing every moment I have with those I love.

 

Note from God: You’re exactly where you’re supposed to be!

Cousins!

Santi and Adri with their 2-week old cousin, Leonardo!

As we got more and more serious about moving to Lima, we leaned more and more on God.

We asked him to guide our decision.

We asked him for the wisdom to trust that he will always provide what we need.

Now that we’re here,  I continue to ask him for strength and the faith that we made the right decision.

We’ve had our setbacks, and we’ll have more.

But, when I see our children’s faces, I realize that, right now, this is where we’re supposed to be.

I hope the same realization comes to each of you!

[Since Adri started hippotherapy, a little less than a year ago, she’s never ridden by herself. This week, her therapist got off the horse, and for the first time, Adri rode Facunda solo!]

Ok, Yoga, Make Me Healthy Again

He who is completely without stress exists solely in works of fiction.

Since our move to Lima (and for quite sometime before), stress has occupied a large part of our lives.

Gaby’s cancer, Adriana’s diagnosis and the transition to a new life are all the perfect setting for stress to plant its seeds and grow.

With help and prayers from you, our family and friends (and strangers), we’ve overcome the hurdles so far!

A new realization

Yesterday was a wonderful day, as some of you may have read!

Adriana experienced preschool for the first time, and we glimpsed the bright future we know she has ahead of her.

I came to the realization, however, that if I don’t take care of myself physically and emotionally, I risk the chance of not being around to see our kids grow up and have their kids.

I risk the chance of not seeing the cure for SMA and Adriana’s first steps.

Emotionally, I feel like I’m in a very good place. As I mentioned, your prayers and support — and my faith in God, although tested all the time — have strengthened me!

Physically, though, I’m nowhere near my happy place. And, I seemed to have lost the directions to get back.

I’m not in horrible shape. In fact, I just had some bloodwork done here in Lima, and my numbers are very good. Better than they were in the states.

[Aside]

Secretly, I was hoping they’d be worse so I could make the excuse that we need to move back home, for the sake of my health. (Only kidding………..sort of.)]

[End of aside]

My body, however, is one big, tight ball of stress. I’m in constant pain.

I know what you’re saying: “Your getting old.”

My response? “Shut up!”

Photo on 5-29-14 at 11.48 AM

My butt should be much higher, back straighter, and I think my feet should be flat on the ground. I”m going to need more than 30 days.

Anyway, it’s time to make things right……for me and my family!

So today, I started a 30-day yoga challenge on YouTube.

Please send me any prayers, positive thoughts or anything else you can muster up to help me see it through!

Photo on 5-29-14 at 11.47 AM #2

My lifted leg should be pointing toward the ceiling. Yes, that’s right, I said ceiling.

Day 1 realizations

  • My downward-facing dog pose (which should look like an inverted V) is an embarrassment to the practice of yoga (see accompanying photo).
  • Every time the instructor says, “now if this doesn’t quite feel comfortable, try doing it this way,” she’s talking directly to me. Like she knew I’d be attending.
  • Sitting cross-legged on the floor is not supposed to be painful.
  • A quote from one of my favorite TV shows will be resonating loudly during this challenge: “My body doesn’t do that without booze.”

Wish me luck!