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Message of Hope

From Mark & Kate:

We are the parents of a beautiful little girl, Getty, with Spinal Muscular Atrophy (SMA) Type 1. She is perfect in every way imaginable, as we would like to think any parent would say about their child. Even though our normal might be different from others, we are, at the root of it, no different from any other family.

When Getty was first diagnosed, we experienced complete and utter shock. We had so many things to decide so quickly and we suffered through the anxiety of not knowing if we really were making the best choices for Getty.

We researched, asked questions, connected with the SMA community, and became aware almost overnight that so much research had already been done and was still going forward.

Despite the lack of information from doctors, we learned of a variety of different SMA care options. One thing we both felt throughout our first months as SMA parents was many families were pushing research toward a cure. Through these families, we found HOPE and belief that anything was possible.

The care options we chose for Getty may or may not be the same care options other families choose. We made our decisions with a lot of love, time, and what we believed was in Getty’s best interest. We do not judge anyone else in this situation, because it is their own ethical decision to make.

For our family, this has been such a rewarding journey so far, and we attribute that to Getty entirely. She is why we fight every day. She is why we get up in the morning to see the beauty in life. She pushes us to be the best parents possible for her. She helps us slow down to admire the quiet bird songs in the morning. Our lives are entirely at her command. Perhaps we are the one’s that are creating the diva and not the other way around. It is all worth it. We know SMA is considered terminal, but there is so much hope and there is so much promise for a cure that we know in our hearts anything is possible.

We can’t speak for the rest of the SMA community, but our positivity didn’t just organically come about. It was gleaned from the many SMA families who live wonderful lives with their kids. Meeting older Type 1s and their families is an out of body experience. We learned doctors are often wrong and our kids do not have expiration dates.

So here is where our story is going to take a turn. We want to preface this first by saying in no way are we judging a family for choosing the path of palliative care. We honor and respect that when any family makes that informed choice.

We learned of a newly diagnosed family about a week ago. Like all families we learn about, our first reaction is heartbreak because we will never forget the feeling of being newly diagnosed. Then we start trying to figure out a family’s immediate needs based upon what information we may have found about them. Where do they live? Who are their doctors? Is their child in the hospital? Which one? Are they getting the care they need? Do any SMA families live near them to offer support, etc.

This family created a blog called Avery’s Bucket List. They also have a Facebook page with the same name. They suddenly have over 60,000 followers and we can only imagine this is growing by leaps and bounds. The site is set up in the voice of sweet little months-old Avery with SMA Type 1, just like Getty. Avery is beautiful, vibrant, and such a cute kiddo.

From what we gathered, Avery’s family would like to complete a list of activities before Avery passes: Avery’s “Bucket List.” Some items on the list include a first kiss, going viral, getting on the Ellen Show, staring directly at the sun while trying to keep her eyes open, going tubing down a river, skydiving, etc.

Our reaction to the blog has been a mixed bag of excitement and concern. We were excited at the media attention raising SMA awareness. The SMA community has needed a family to break the media barrier to make SMA a household word. We are certainly trying all we can, but boy, it is hard to get the word out to a huge population that (1) SMA exists; (2) SMA is bad but there is hope; (3) our reality could be anyone’s reality; and (4) with enough money current research could lead to a cure relatively soon.

Our concern grew when “Avery” suggested that a life with SMA amounts to nothing more than doctor appointments and crying. The family has deleted certain words from the blog, but one part formerly spoke about “schlepping” SMA children around to doctor appointments. This change apparently only happened after a fellow SMA mom suggested the edit.

Listen, SMA is a very hard road, no doubt about it, but after reading their blog more, we came to feel so deflated. We think if we didn’t know anything about SMA and this was our only exposure, we wouldn’t think there was any hope whatsoever; all SMA encompasses is pain, misery, and a torturous countdown. Having said that, it is their blog and that is that.

However we believe there is something more that this family can do: spread a hopeful message about SMA in general. We just want to say to Avery’s parents, you have such an incredible opportunity right now with the media coverage you are receiving. You have the ability RIGHT NOW to do so much for all those affected by SMA. Just the slightest mention that there is HOPE would go such a long way. Mentioning that research is moving forward and needs funding would go a long way.

You have this moment to make a huge impact to benefit so many families who have struggled and sold lemonade, baked cookies, organized walks and runs, done concerts, sold Tupperware, asked family members for donations, held rummage sales, washed cars, organized spaghetti feeds, shaved their heads, and thrown beautiful galas for the sake of our kids. We do this with HOPE to make a difference in curing SMA.

This is your time now as an SMA family to help continue this momentum to a cure. It may only take a couple of sentences to make a big difference.

A message of hope will enhance, not inhibit, The List. Wouldn’t it be awesome to cross off “Cure SMA” from The List before Avery’s last day? It is possible, with the right message, Avery will experience a cure.

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  • Brenda Barberena says:

    Thank u for saying this! And saying its from such a neutral but strong stand point. SMA is ugly, if we all had the option we’d chose not to have it in our life at all. But with that said, all these babies who were born into the SMA world unknowingly (and some knowingly) deserve to be represented with the truth, as do the angles who died in vain like my daughter Bella. And the truth is that yes SMA childre are happy, yes SMA is ruthless, but SMA IS THE DISEASE CLOSEST TO A CURE and funding is the only road block we have. We know what causes it, we know what can fix it, all we need is the money to push it to the finish line. And they (Avery’s parents) have the opportunity to push our efforts forward at light year speed. I truly hope they read your blog, I hope they understand the message behind it, but most of all I hope they realize that the #1 most important goal to cross off their bucket list “Cure SMA” is entirely possible and within THEIR grasps. God bless them, Avery, and their journey <3
    Brenda Barberena
    Mother of Bella MIa Barberena; SMA Angel gone to soon

  • Evelyn & Evin Stump says:

    Precious Getty — Love the “coif.” The photo of your dancing feet is worth framing! The family Victory garden is amazing. Happy Mother’s day to Mommy and Grandma Nola on 13 May. Much Love, Grandma & Grandpa in Temecula.

  • cath young says:

    I read their blog today and I felt it was inspiring, but I am not in a SMA family. The blog and other places where they are making themselves known do encourage donations to an SMA organization towards a cure.

    Many disability groups do not focus on a cure for their particular condition and some are outright against calls for cures, which to me is going too far. They want the focus to be on a better life now for those who have the condition and for funds to go for that purpose rather than for some future cure.

    Hopefully, your Getty OWl will get to meet this SMA celebrity. She would make a great big sister to the little one.

  • Alexandra says:

    Thank you for writing this. There are so many things in the world that are impossible to make sense of. In those situations, the most important thing to do is be pro-active and look at what is possible rather than what isn’t. To place “Curing SMA” at the top of Avery’s Bucket List would be an incredible thing – sometimes we need to write down what seems impossible if only to remind people that so much is possible.

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