Well December 23, 2016 will go down as a pretty fascinating day. We had heard the FDA may be days away from approving Spinraza to help our kids and adults with SMA. At this point in our six and half year journey, you tend to be introduced to people, organizations, and companies that just might know just a bit more than the general public. So while we knew something grand was coming, it was a completely different feeling when the words were actually published and made public.
Treatments don’t just “happen”. This is a big deal. A very big deal. In the words of one of Getty’s doctors, “You go through medical school realizing really quickly that treatments and cures for rare diseases just don’t happen. They just DON’T happen!” I am sure he was incredibly reassured that yes, indeed it is possible.
There are so many aspects of this news that I think is important for the general public to understand. The SMA bubble we live in is incredibly hopeful and beyond excited about the prospects of what Spinraza can do for all of our children and adults, but there is another aspect for everyone to understand. What this medicine can and will do for newly diagnosed parents is remarkable.
When Getty was diagnosed it felt so hollow. “Take her home and love her.” That “talk” still rings in my head and there is still such a bitterness with the plan the doctor had for Getty and for us as family. The message/prophecy the doctor told us that day, Friday, July 30, 2010 was , “you have little to no time with her, so make the best of the year, if lucky enough to, make as many memories as you can.” That was our reality and now I am just so thankful that while SMA will continue to be a diagnosis, it does not have to be an end all to anyone’s story.
My expertise is in all things Getty. My expertise in what Spinraza does and how it affects people with SMA is reasonable at best. So, rather than stumble and mislead, this video does a really good job of simplifying the medicine and its abilities.
We are hopeful as we always have been. The idea that something incredible could be possible seems to have come to fruition. Here we are and here we go!
Next steps for Getty:
-Doctors have been notified.
-We have been in contact with Biogen and have filed the necessary paperwork.
-Keep Getty as healthy as humanly possible.
-Waiting on next steps through her doctors and insurance coverage.
-Try and remain calm and patient, knowing very well that this treatment could slow, if not stop the progression of degeneration.
-Still waiting patiently. 🙂
What readers can do to help:
-Please send loving wishes to all of our SMA angel families. They need love and support with the news of this treatment just like any other SMA warrior’s family. This is a celebratory time as well as a bittersweet one. We are all in this together and we all need to care for each other.
Today is a moment so many, many, many, families have been waiting for. My mind is a bit scattered right now, but for now, this is what we know.
I wish I could describe my thoughts and feelings articulately, but I can’t so I will just get back in bed with Getty and snuggle her.
If you have a moment, please read.
“We are seriously in uncharted territory in the SMA community today. We finally have a viable treatment for SMA. This one counts folks and we are just so beside ourselves in celebration. This treatment does not discriminate. It is for all types! ALL types!!!!
Our love goes out to all SMA families. Our hearts are with all angels and warriors and their families.”
Ever since Getty was little, she has always enjoyed watching some form of dance. Music is also one of her favorites. It really doesn’t matter what, honestly, she enjoys the beat, the motion, and the costumes that come with any production. When she was just over two years old, I got a performance of The Nutcracker for her to watch and she was instantly glued to the screen. Her eyes jumped around with the ballet dancers and she would smile when there was an exciting change of music. As November rolled around that year, I started to ponder whether we could actually go to a performance of The Nutcracker.
We are so fortunate to have an amazing ballet here in Sacramento. The Sacramento Ballet is absolutely extraordinary. To the dancers, to the production, to the music. They do such an amazing job of putting on a top notch performance. With that said, I started to work on logistics.
Having a child with a fragile immune system, complicated needs, and an overall consumption of details, I initially was a bit worried about whether we could pull this off. After speaking with the rep on the phone (I think I took up pretty much her morning), I was convinced that we could make this work.
Our first trip was in 2013 and we have been back ever since. Actually now I think it if fair to say that we wouldn’t miss it! It is tradition!
I would like to first thank the Sacramento Ballet, the Sacramento Community Center Theater, and all of the staff that seriously help make our time so memorable.
For us, it is not just buying tickets to a ballet. It is so much more than that. It is having a safe entrance and exit for Getty if we need to make a quick getaway in case of an emergency. It is working with a staff that understands that we need a bit of flexibility by way of seating Getty just right so she can see and be comfortable. It is the seating in the first place, that allows anyone needing accessibility to have literally front row access and great visibility to see the amazing performance. There are moments when I can stand back after an experience out with Getty and say, “These people just get it!” And this is that time. Thank you all.
Getty always wears a super fancy dress. It is always a special day for her to hear all of the voices in the theater before the performance. See all of the pretty dresses so many women and children wear for the special day. The curtain and stage is immense and I know she gets a kick out of being at such a special place. My eyes are always locked on her as the curtain goes up. Her eyes show that of wonder, elation, and such intense approval of this day. It is so beautiful to watch her. She sings along in certain places and it is obvious what parts she enjoys more than others. Her heart rate jumps during certain parts as well as long squeals of approval. It is breathtaking to watch her eyes pop out of her head when the nutcracker comes to life. 🙂 The constant change of music and scenes are just so cool to her. It is so fun to watch.
Intermission is NOT so fun. She immediately cries and is pretty inconsolable. But you see, this is Getty’s world, so dancers and the orchestra are not supposed to need time to rest. 🙂 Once the curtain goes back up she immediately forgives them. 🙂
So this year was no different, Getty loved it and we will be back next year.
Traditions are awesome! 5th Anniversary coming next year. So excited!
Well it is time!
First and foremost, we would like to thank everyone for entering our giveaway. We are so thankful to have the means to hold an iPad giveaway and we hope to hold another one next holiday season. The hope is to make this a Getty Owl Foundation tradition.
So here we go. We would like to announce the 5 iPad Recipients.
Enjoy you guys! All of our SMA warriors deserve technology such as an iPad. We hope to help get more into the hands of some incredibly deserving human beings. For now, your are our first 5! 🙂 We would love to get a picture of each of you enjoying your new iPad. When time permits, send us over a picture, we would love to share them.
Early online registration has begun for the 6th Annual Getty Owl Run/Walk.
Please join us Sunday, February 26, 2017!
We are so excited to celebrate another awesome year with our local and virtual community. A huge thank you to everyone who has made our annual Getty Owl Run/Walk such a fun event. We are so thankful to our Sacramento community for also offering Getty Owl Foundation a solid platform for SMA awareness.
The Getty Owl Run/Walk helps us raise needed funds for research and for families affected by Spinal Muscular Atrophy. Supplies, life saving equipment, and transportation systems to name a few, are all necessary and are also expensive. We would not be able to support families without the graciousness of so many that participate in our annual Run/Walk.
Currently we are holding a giveaway for 5 iPad minis for five deserving members of our SMA community. While we do not know the recipients yet, what we do know is the impact that this device will have on them. SMA may weaken muscles, but it does not inhibit the brain. An iPad can help create and strengthen a strong sense of curiosity and intellectualism. Because of funds raised through our event, we hope to continue the good work in getting iPads into the hands of many deserving warriors.
Over the past five years, Getty Owl Foundation has raised over $180,000 through the Getty Owl Run/Walk. Our sincerest appreciation to all of our sponsors, participants, family, and friends who have supported us.
So here we go!
ONLINE REGISTRATION CLICK HERE!
RACE DETAILS CLICK HERE!
Here is a sneak peek at our 6th Annual Getty Owl Run/Walk tech shirts.
Big thank you to Paul Le, from Paul Le Designs for his awesome talent.
Check out all of the AMAZING SPONSORS who are supporting us. Without them, we could not continue to do the good work we do.
If you know of a business that would like to support the 6th Annual Getty Owl Run/Walk, here is our SPONSOR KIT.