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.
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.
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.
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!