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From Kate:  We cannot control our excited in hearing the amazing news of how successful Bucks for Kids was on Sept. 29th at area Dutch Bros. Coffee. In order for this exeunt to be successful, we start at the top. Thank you to the Grubbs family and your incredible staff. Every single year you have been kind enough to choose Getty Owl Foundation, we are always so appreciative of your gracious offer. The day is always a celebration and it starts from you as a family. thank you so very much for keeping Getty in your hearts and understanding how SMA affects so many families. Thank you for giving us a chance to continue to support those in need. Love you guys!  I hope everyone in the area understands how Dutch Bros. Coffee affects people all around the region. Yes, they sell awesome drinks, but thankfully they also offer a commitment to their community. They see a need and they act with such generosity. Thank you Dutch Bros. Coffee, the Grubbs family, the incredibly awesome staff, your customers that makes all of this possible. You ALL helped to make Bucks for Kids an absolute success! 

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Join us tomorrow (Saturday, September 29th) @ Dutch Bros. Coffee: BUCKS FOR KIDS!

From Kate:  We are so fortunate enough and thankful to have been chosen again for Dutch Bros. Coffee’s, Bucks for Kids. This amazing annual fundraising event is something that we here at Getty Owl Foundation, depend upon. Because of the amazing support from Dutch Bros. Coffee, Getty Owl Foundation is able to continue to purchase medical supplies, life saving medical devices, and iPads for SMA kiddos to help bridge the gap with communication and academic needs. For a 100% volunteer nonprofit, every single donation is important and is used in a way that best helps the SMA community. Gaining the funds and having the autonomy to support SMA families in such custom ways has truly been a beautiful experience.  Thank you so very much Dutch Bros. Coffee!!!!!!!!!!!!!!!!!!!!!! We hope everyone in the Sacramento area can stop by one or all the following locations and helps support Getty Owl Foundation this Saturday, September 29th. We thank you all in advance for your support and we hope you enjoy a great espresso drink………because they are ALL amazing!  The fundraiser is all day and night. Stop by and grab a drink or drinks from any of the below locations.  Citrus Heights, Fair Oaks, Sacramento Locations:  8552 Madison Ave. 7445 Madison Ave. 5289 Auburn Blvd. 4625 Manzanita Blvd.    

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Sweet Reagan

From Kate,  The game changed on this day, last year. A blanket of emptiness, a fog of disorientation, and an overwhelming feeling of loss was plentiful and overwhelming. Reagan departed from her physical existence on this day. Shannon and Randy, her incredible parents were now without her and there was just nothing fair about it. It was unkind, it was unjust. A saving grace was that their family and friends came with such immediacy, it was a beautiful offering of love and comfort that must have brought them such reassurance.  If you have ever met Shannon and Randy, you would know that even with a diagnosis so grim, there was never space or energy to acknowledge the possibility of losing Reagan. They always focused on the present, the now, and the tangible. They also welcomed family and friends to meet Reagan and each were welcomed with her special spirit and she was brought into their homes and hearts. We got to witness dance parties, milestones, outings, birthdays, hugs, kisses, and life. Their ability to see through any adversity and still focus on the good and the optimistic, offered such positivity into the world and it was infectious.  Because of their selfless offerings, the world got to meet Reagan. This larger than life human being. A true spitfire that could flirt with you with just a slight wink of an eye. She could hypnotize anyone with the slightest of ease. Reagan had the power to just make you want to do better. Be a better friend, be a better contributor for your community, just be better, whatever that meant to you.  All kinds of people come into your life and if you sit still long enough, you can feel a presence of energy from certain people. You can call it what you wish, but I like to think that while there is good in all of us, some people have the ability to use their presence to create change. Reagan did that with such ease and grace.  While we can’t begin to know what Shannon and Randy are feeling and thinking on this day or any day for that matter, you can be certain and comforted knowing that they would want everyone to take a moment today to remember this incredible human being. Remembering the sweet coos, the eye rolls, the smiles, the determination, and the unconditional love, Reagan offered to everyone.  We miss you Reagan. We miss you so very much. Please continue to make yourself known by a beautiful sunrise, a gentle breeze, or in my case, a spunky little hummingbird that sneaks up on me while watering the plants. It perches just long enough to be noticed and then it is gone as fast as it was there. I say thank you and I love you every time it makes it presence known. Shannon and Randy, you hearts are so vast and welcoming. You continue to contribute to your community in ways that inspire people to do better and to do more. Thank you for your selfless offering of Reagan. Thank you for sharing her with so many. Thank you for allowing so many to see into your world of life and love. Today like everyday, we honor sweet Reagan. Love you guys!   

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The Bunker

From Kate: Getty has been diagnosed with SMA for the past eight years of her life. At the age of four months, her pediatrician noticed that she wasn’t bearing weight on her legs and we were sent to a neurologist that very same day. Within a few minutes of being in the appointment we were told that Getty had an incurable, degenerative, and complicated disease called Spinal Muscular Atrophy. We were instructed to just “Take her home and love her.” After that point the game of life changed. It changed in ways I couldn’t see coming: the addition of devices, supplies, medical professionals, etc. I didn’t know exactly who how to care for Getty, so the steep learning curve was intense and very consuming. I remember often just not eating or sleeping for many nights very early on, worried that if I left her side something dire would happen. After a while, I realized that someone needed to stuff food into my mouth, literally, so I would have some kind of substance while cramming for this incredible test of strength and courage. Caring for Getty has been a roller coaster in all kinds of ways: setbacks, celebrations, triumphs, euphoric, confusion, anger, grace, and incredible amounts of unconditional love and support. I can’t speak for all SMA families, but something interesting happens after some time. You lose track of time, you lose track of awareness, you lose track of friends, you lose track of you life before SMA, you lose track of self, and you lose track of the world. For me, all of this loss kind of ran together. The intensity of caring can create a sense of isolationism. At some point your vocabulary and identity centers around your child. An SMA mom explained it like this one day, about four years ago. “It’s like being in a bunker for years. You have the necessities to live and care for your child, but the rest of the world keeps moving. Every once in a while you are able to leave the bunker and life as you knew it, changed. You forget how to socialize. For example, you get to a grocery store and forget everything you were supposed to buy because your body, brain, etc. is still trying to figure out how on earth you got to the store in the first place. Why is it so loud in here, and why is everyone in such a rush? Why are parents being unkind to their children? Wow, that kid just put a whole banana in his mouth, I should just wait here and make sure he doesn’t choke, because I am actually a trained professional now. 🙂 ” I remember the moment she was finished with her story. I was laughing so hard, tears were running down face. If you read with a certain perspective, maybe the summary would be, you left home to go to the store and you felt a little out of place. But I would argue there is so much more to the story that most people might not understand. The truth is in the details. It’s the blanket of fog that envelopes you as you leave your child and go out into the real world. It’s the panic that you endure the second you leave your child’s side. There is a blankness that happens in your brain when you are asked to remember something other than the needs of your child. It’s almost like there is absolutely no space in your brain for grocery lists, basic errand needs, directions, and conversation. I call it the “brain dump.” Anything other than aspects of Getty and Getty’s care immediately dump out of my head. In many ways I took solace in her story. I could relate instantly and it offered me a comfort in knowing that I was clearly not the only SMA mom feeling this really weird sense of isolation. I remember fondly being in social situations and not understanding how to carry a simple conversation. I just wanted to get to the heart of what we were talking about and move on. 🙂 I wasn’t patient, because my rationale was basically, “I don’t have time to do small talk. How do people even have time in the day to do this? Just get to the point and let’s move on.” A bit awkward. 🙂 Something else kind of happens that I didn’t foresee either, and that is relating to others. It is very hard to relate to non-SMA moms. There is no judgement involved, it’s just so different. The level of their child’s independence, experiences, aspirations, parent aspirations, extra ciricular activities, relationships, etc. It literally is all different. If I responded with the same topics I would say that Getty has little to no independence. She relies almost completely on every aspect of care. Her experiences are often surrounded by medical professionals and tests. I don’t truly know what her aspirations are, but hopefully with more time, using her eye gaze device, we might be able to have a conversation about that topic. I don’t have parental aspirations (insert opinion), because I don’t think it is our responsibility to create, coerce, and/or support our dreams for our kids. Extra curricular actives are almost impossible. Most, if not all are not accessible. We also have to be super careful about germs and exposure. We remain isolated for a good part of the fall and winter months. Relationships are also difficult. Not in the way one might think. Getty has always been welcome in any social setting, however sometimes having strong relationships can be tricky because she is unable commit to a consistent routine with kids her own age. The VGo she uses for school is an awesome way to bridge the social and educational gap, but kids like routine and consistency and sometimes the screen of a robot can have its challenges to make friends and keep friends. Pretty different. And if you are reading this with sadness or indifference, please don’t. While many of these examples could leave a reader feeling like our lives might not be as fulfilled, I want to reroute your thinking now. The happiness of our kids are the priority and with this, a sense of fortitude. We figure things out and make it happen. I am always inspired by other SMA families that take a situation and rethink the possibilities. They start their own Girls Scout troop. They find amazing ways to solidify independence for their kids. They create gadgets, develop software, they build physical therapy frames to make sure their kid’s are engaged and independent. They advocate for their child in IEP’s. They fight for extended PT and OT time. They figure out the complicated map of social services that give their kid’s more options in care and activities. They take a simple toy and adapt it for their child’s needs. And here is the best part, they share it with all of us. This community is determined to give their child and children with SMA the tools for independence, experiences, extra curricular actives, and a way to build relationships. So while I respond in a certain way in the above paragraph, there is more to the story. If a non-SMA parent would like to sit down and talk about Getty’s life and how it is enriched, let’s have some coffee. Although, I will let you know now, I have become a bit awkward. I don’t speak in complete sentences now. I stare at my phone to make sure there are no emergencies at home. I might drink the coffee super fast because I need more to refuel when I get home. I also might drink it fast because I worry I will need to jump into gear if there is an emergency and I don’t want to waste that precious cup of joe. I also might accidentally cut you off in mid sentence, because I just realized that I missed an important piece of my story earlier and I think you should hear it. 🙂 Awkward, I know. There is more to this practical story of caring for someone with SMA. I have much, much more. While this month focuses on facts and statistics about SMA, it is also a glimpse into the practical world that has been created since diagnosis. We change with time, but I think SMA parents, in particular evolve into something incredibly different than if their child was not diagnosed. I don’t have a crystal ball, but sometimes moments will happen and I think, would I have reacted with the same motivation or determination if I was still teaching AP US History or Government? Like would life be a daily struggle to keep my head above water? My guess is no. My once ambitious self might not be constantly worried about my child’s oxygen levels or HR. I wouldn’t be worried about the exact calories they are consuming. I wouldn’t be apprehensive during doctor visits of any kind. I am not sure where my worry would be placed. I’ll never know. But I know that I am thankful for a group of families that do get it. We are spread around the world and while that is a comfort, it sure would be nice to be a able to walk across the street and have a cup of coffee with a SMA mom that just gets it. Man that would be nice and so healing.  So if you ever pass by a mom randomly walking the isles of a grocery store who might look as though she is in a fog, just say hi and throw her a smile. Whether she knows it or not, just getting out was the best thing she could have done for herself that day. Even with the fog, even with the panic, even with the brain dump, she is getting some unknown rest before she goes back into the bunker.


The Nuts and Bolts of Spinal Muscular Atrophy

From Kate:  Since it is SMA Awareness Month, let’s talk facts about Spinal Muscular Atrophy. I know for us, we had never heard of it until Getty was diagnosed and perhaps someone reading will be motivated to share these facts with others and perhaps awareness can continue to spread. Interesting enough, since Getty’s diagnosis, we have learned of many families on a similar journey through friend of friends. Which tells us that this disease affects all people, all age groups, all genders, and all really everything that links us as human beings. It is so important to talk about and discuss aspects of SMA. I hate to think that this genetic disease continues to hide in the shadows until an unsuspecting family is given a similar diagnosis and prognosis.  -Here are some facts about SMA:  -Spinal Muscular Atrophy is a genetic disease that causes progressive muscle degeneration and weakness. Individuals with SMA develop feeding and breathing problems as the weakness gets worse over time. -SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). In healthy individuals, this gene produces a protein that is critical to the function of the nerves that control our muscles. Without them, nerve cells cannot properly function and eventually die, leading to debilitating and often fatal muscle weakness.  -SMA is still the #1 genetic killer of young children.  -SMA affects approximately 1 in 11,000 babies.  -1 in every 5o Americans is a genetic carrier of SMA.                *To put this into perspective, I have two examples to think about. Our house loves Adele and I was lucky enough to see her show in Oakland, CA.   Sometimes I can be a wet blanket when I am among lots of people because my mind goes straight to statistics. “You know there are at least 390 SMA carriers here, I wonder if they are aware?” Taking it to another level you think about compete totals of Adele’s American Tour, she sold over 750,000 tickets. So it is possible that over 15,000 people who went to her performance in America was a carrier of SMA. That is more people than the population of Healdsburg, CA; more than St. Augustine, FL; and more than Sedona, AZ.       * I want to apologize for the inaccurate 1 in 40 statistic. Oddly enough, August actually snuck up on us as well and I failed to make an updated image. My apologies, but I hope is that it helps offer some information. What is important to understand is what chances look like for two SMA carriers. When two SMA carriers have a child, there will ALWAYS be a 25% chance of having a child affected by SMA.  The statistic that I always get overwhelmed by is the fact that 50% of children born to two SMA carrying parents, can become SMA carriers themselves. In an of itself, that is just math. What makes that overwhelming is that there are so many people out there who may not know they are SMA carriers. This silent genetic disease continues to propagate into our population and unfortunately leading to another unsuspecting family that will at some point, get the heart breaking news that their child has SMA.    -SMA is a pan-ethnic disease and does not discriminate based on race, ethnicity, or gender.  -There are 4 Types of SMA: I, II, III, IV, which is based on age and highest milestone achieved. For more detail about Types, go HERE.  -These are just a few of the real facts and statistics about SMA. For the second year in a row, we are able to rejoice in the new fact that there IS A TREATMENT!!!!!!!!!  -Spinraza was approved by the FDA on December 23, 2016 and it has become a game changer for many people affected by SMA. To learn more about Spinraza go HERE.           

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