Guest Blogger Laurie Hoirup:
I have never been asked to do a guest blog before and I am quite honored to be doing so now. I was lucky enough to participate in the Getty Owl Run/Walk as a vendor and I can’t begin to stress enough how very wonderful the experience was for me.
Anyone visiting this website already knows about Getty and her diagnosis with SMA 1, along with how debilitating it can be. I’m sure you are also aware of the incredible support that surrounds her daily, from her amazing parents, family, friends and others who have been touched by their determination and strong spirit.
I’m not so sure you are aware of the spectrum of SMA… I am 57 years old, diagnosed with SMA 2 as a very young toddler and though my disability is certainly significant, it in no way is as severe as that affecting the very youngest children, diagnosed usually by the age of one.
I am for the most part rendered with quadriplegia; no use of my limbs except for my right hand, which operates my power wheelchair on a good day. I am however, blessed to be able to feel everything throughout my body, have complete bowel and bladder control, can sit upright, have some support of my head, I can hug and I can kiss.
I require full personal care for every aspect of independent living; toileting, dressing, showering, grooming, feeding, outdoor mobility, and driving. I am however, blessed with a wonderful husband, family and friends, the ability to complete my education, marry, give birth to my two amazing children, witness the birth of my grandsons, worked at a great job and write my memoir.
My breathing capacity is very limited; 23% of normal, which limits my strength and threatens my life and yet, I am blessed not requiring a full-time ventilator or oxygen, I can speak, I can chew, eat, swallow fairly well and I can share my joy of life with others.
There are also, two more stages of SMA; type 3 and type 4, each having the diagnosis coming much later in life, with considerably less effect on muscle function and ability to live life independently, for that matter, to live. They are truly blessed, especially in comparison to myself, but more so, for the huge differences from SMA 1.
The other faces of SMA are those who are not afflicted with the disability at all, but are affected in other ways, due to their love and compassion for those who are; family, friends, colleagues, doctors, nurses, teachers and the list goes on and on. As I look around me and see all who have supported me throughout my life, and then look at Getty and all those who are at her side, fighting her battle, I realize just how far and wide SMA stems.
These relationships make life worth living for however long, and though I can’t speak for those like Getty, who are probably too young to be so philosophical, I believe that to live and be loved is the real magic here and where there is SMA, there is definitely love.
Getty Owl Foundation has brought together people from all aspects of life. It has brought out the goodness in people, the willingness of others to give of themselves and the belief we can make a difference through love and hope. I was truly honored to be part of this incredible team!
Laurie Hoirup is an incredible and inspirational SMA Warrior and disabilities advocate.
Please check out Laurie’s book here: I Can Dance: My Life with a Disability
Well I am not entirely sure how to accurately capture what happened at our 3rd Annual Getty Owl Run/Walk. I will just use one word……..MAGICAL!
The weather could not have been better, the atmosphere could not have been more positive, and the overall outcome of our event was just breathtaking. We surpassed our goal of 1,000 registered runners and walkers and likely had nearly 1,500 people in attendance.
We were also able to raise over $30,000. Funds will go to continuing our support of SMA research such as the Gene Therapy Program at Nationwide Children’s Hospital in Columbus, Ohio, assisting families affected by SMA, and raising SMA awareness.
Ages and abilities of all kinds were in attendance to support the event. It was great to see so many kids and their families spend the morning together.
The success of this day and event could never have taken place without the support of so many individuals and companies. So without further ado I would like to thank:
Mark, for taking such great care of Getty as mama was racing around trying to make all of the puzzle pieces fit together to make the event a reality. Getty, you have one terrific daddy.
All of our friends, family, and board of directors that put time and effort into making the event such a success.
California Family Fitness
Dutch Bros. Coffee
Fleet Feet Sports
Thank you all of our awesome sponsors.
Without these four incredible companies generously supporting Getty Owl Foundation and Getty Owl Run/Walk, we would not have and the success we did and will continue to have.
All of the volunteers for their awesome effort. You were all essential to our success. Thank you all for helping.
Thank you to the vendors who helped to make our post-race festival fun and interactive.
Capital Road Race (Kellie and Rich) and Nor Cal Ultras (Julie) for their timing and guidance.
We are already planning for next year.
Hope to see you February 22, 2015!!!!!!!!
Here are a couple pictures that were taken that truly capture the race. Thank you to Four Stone Photography for their talent and support of our foundation and our family.
A little housekeeping for all interested in supporting our upcoming 3rd Annual Getty Owl Run/Walk on Sunday, February 23rd.
Today (Sunday, February 16th) is the last day for early registration. Tomorrow (Monday, February 17th) registration fees go up $5 for all 5k and & 10k registrations. Kids 1/4 mile run stays at $15.
We are literally a week out from our upcoming race and we are so crazy excited!
We also have our virtual option this year. Support Getty Owl Foundation without in the comfort in your own home.
Every year we have had the fortunate and humbling experience of increased registration every year. The support we have received in past years has been amazing. Our goal this year has to hit the 1,000 mark and we are getting so close!!!!! Will you help us make this a reality?
Support Getty Owl Foundation!
Age Group Winner Medals ready to go!
Running with the owls!
Our 3rd Annual Getty Owl Run/Walk is rapidly approaching and we are so very excited!
We have one request to anyone who is reading this…….please help us reach our milestone of 1,000 registered runners, walkers, and rollers. WE WERE SO CLOSE last year that we could smell it. Well you get the point. Let me explain how important this goal is for us.
1) That is 1,000 runners/walkers becoming educated about Spinal Muscular Atrophy.
2) That is 1,000 race tech shirts that will be worn before/after the event and so the awareness continues.
3) That is 1,000 runners/walkers that will become SMA warriors to spread awareness themselves.
4) That is 1,000 runners/walkers that have come to support not only Getty Owl Foundation, but supporting our warriors, just like Getty that fight this disease every day. They are amazing kids that deserve us all to bundle up on Sunday, February 23rd and run or walk a 5k or 10k. Some of our warriors will be joining us and we cannot thank their families enough for making this trip.
5) That is 1,000 runners/warriors that will help financially from registrations to help us continue to donate to FDA approved (fast tracked I may add) treatment that will start soon to help our kids. This could be the key that unlocks the door to a cure.
*** I will add more as my brain wakes up this morning, I assure you.
This year we added an option for anyone , living anywhere in the country. We have added a virtual option to the run.
What does virtual mean you ask? It is a simple way to support Getty Owl Foundation without physically being at the run. There are a couple of cool things about this option. We will mail out to you the event tech shirt, race bib, goody bag and some GOF stuff to say, “hey thanks.”
Last year, we had many people ask for this option and so we wanted to make sure we had it as an option this year.
We would love the support and now for some, you can, virtually.
We’d love to see 2,000 people in attendance. We can do it! Thank you all so far for your support for our 3rd Annual Getty Owl Run/Walk. We are trending towards hitting our goal, but we are still out a few weeks, we need your help and support.
A few dates to keep in mind.
Late registration begins February 17th. The price will increase to $40, so register soon.
I would be remiss if I did not take a moment to thank so many incredible SPONSORS. I know you have all heard it before but the statement could not be more true. We would not be able to organize and coordinate such a great race without the incredible support of so many gracious sponsors.
Check them out. Become a patron. These companies are the backbone of our continued success and without them we would not be able to be such a success.
So let’s get this party started! click here to REGISTER!
QUICK UPDATE………the medals are in!
I need to write to you in the hope that you will understand what you are putting me, your mother through these last few months.
You have blossomed into a little lady before my eyes. When did this happen?
You are independently finding ways to entertain yourself. When did this happen?
You are sassy and at times sarcastic with me and my motherly ways. When did this happen?
You watch movies or shows now and laugh literally when an adult should, which creeps me out sometimes. When did this happen?
Your attention span to absorb anything and everything is so beautiful. When did this happen?
Your determination to vocalize letters, numbers, and words, undeniably makes this mom’s heart sing. When did this happen.
You are learning and growing leaps and bounds in pre-school. When did this happen?
We fought so hard to get you everything you need for your education and yet as I sit behind you and your teacher and just watch and listen I am sometimes in agony. It is like for those few hours you are engrossed in math, letters, books, etc. you get to be with someone else and not me. You should be and you deserve to be, but this mama hurts sometimes. I guess if I could compare it to when I went to school and left my mom for the day. I wonder if she missed me? I’ll need to ask. Once school is over I get to see your beautiful face and we get to continue our day together.
I am so very proud of you babe. I am so proud of your determination. I felt compelled to tell your doctors just how incredible you are and all of the milestones you are accomplishing and how you are so crazy smart. I got to feel like that mom that beams from ear to ear to gush about their child. Yep, I am that mom. I remember after I gushed I looked at your face and you rolled your eyes, to which my response was, “get used to it missy, you are kicking butt kid and the world will know at any chance I get.” Sorry Getty but you are stuck with me.
I stopped seeing the word terminal a long time ago. I see the word future in every direction and I see all of the great things you are going to do and accomplish.
You get your power chair in a few weeks and I can assure you that mama is going to gush again. Everywhere to everyone.
When you were diagnosed I grieved about all of the things I thought you would miss out on in life. I grieved as a mother about the things I thought I would miss out on as your mom. But you know what? THIS is far better than I could have ever imagined as a mother and you, my little owl are more than I could have ever asked for. You are flawless, you are incredible, you are beautiful, you are patient, you are intelligent, you are a dream come true.
Now I just need to figure out how to get you to listen to your teachers and not sass them. If history serves me correctly I was the same way. So basically we are in trouble.
I love you.
Your ever so diligent and loyal servant,
Mom (Or the way you yell at me down the hallway, “Ommmmmmmm)