Here’s a video of a boy with SMA “surfing” with a dog named Ricochet. Thought of this thread when I saw it.
We are friends. Aaron, the kid in the link is the first affected kid we met after Getty’s diagnosis 5 years ago.
This was just published today and I had to share it with you right away.
Neuroscientists identify specific enzyme that plays critical role in spinal muscular atrophy
Neuroscientists have discovered a specific enzyme that plays a critical role in spinal muscular atrophy, and that suppressing this enzyme’s activity, could markedly reduce the disease’s severity and improve patients’ lifestyles.
Interesting. Thanks for the share!
That’s hopeful news. Here’s hoping it’s not too late for Getty.
Research indicates lack of SMN protein causes motor neuron death. Thus any treatment for Getty we would expect to see possible preservation of remaining motor neurons and perhaps rescue of a handful of motor neurons that may be inhibited and/or near death. Depending on the efficacy of the treatment, we would expect anything from slowing SMA progression to halting progression to possibly slight reversal of progression, but likely nothing close to full motor neuron rescue, unfortunately.
That said, if we could safely slow or even halt progression with treatment today, we wouldn’t hesitate to do it and we’d be grateful for the opportunity.
Wishing you all the best!
Thank you!
Our nonprofit event is tomorrow. For those participating and/or supporting, Thank you!
Getty’s 6th birthday is today.
We have come a long way since diagnosis day…
I started this thread about 2 weeks before the bombshell.
Thanks everyone for your support and sticking with us.
Our lives are so much different now. We have changed dramatically… But we adapt and keep moving. It’s not the happy life we had expected, but we are happy in our new directions. Things are going well.
As long as Getty is happy, we know we are doing the right things. She has now tripled the life expectancy of her prognosis and is one happy and sassy girl.
Happy Birthday, Getty!
**Happy Birthday Getty Owl!
You’ve come a long way, Baby!**
Happy birthday Getty Owl!
Happy birthday sassy Getty!
Oh just wow! SIX ALREADY? Damn, but time flies. HAPPY BIRTHDAY MISS GETTY!!
I remember your first thread Bearflag, and the change to the title after consideration. I’ve been following both here and through your gettyowl blog for all those years. And thank you for sharing all the news with us.
May your little girl keep on keeping on, and being sassy and whatever the hell she likes. She’s earned her place as an honorary doper, and you and Kate never cease to amaze me with your strength and perseverance.
Whatever you’re doing, keep it up!
kam xx
Saw some minor celebrity on Millionaire yesterday playing for the Getty Owl Foundation. Bearflag, were you her lifeline? Unfortunately she tapped out early, but $10,000 is cool!
Millionaire is still on?
StG
As a daytime syndicated game show.
I think it was someone from the bachelor.
Yeah, we watch reruns daily at lunch, but this one I caught last night during prime time. The new host is also the host of The Bachelor, and the player was a girl featured on that show.
that is sooooo cool! congrats getty owl foundation!
in other getty owl news, you can sign up for the annual 10k run. i love that you can do the run virtually! my kind of run.