Getty Owl Foundation

Thanksgiving 2011

From Mark:

Blue skies and summer heat slowly give way to brisk breezes, mild chills, and golden trees. The rains come as the winter draws near. It’s nice and mild outside, and it’s equally nice inside. Family joys and football cheers fill the air.  Kate and I were married in Portland in the fall. It was cool, damp, and gorgeous. Autumn is definitely the most perfect of seasons.

These days, fall takes on an entirely new meaning for us than it has in years past. It is still a time recall a forgotten appreciation for warm blankets and the Great Pumpkin, but it is also a time to raise our defenses, keep diligent watch, brace ourselves for siege, and wage war against illness. We harvest extra hand sanitizer, exam gloves, Synagis, and vitamins. We review and revise our sick protocols and work to ensure disease is not lurking in the shadows lengthening over our home.

We are not germaphobic for its own sake. With SMA, when your child cannot cough, cannot swallow, cannot breathe a good part of the day without support, and can barely sneeze, lockdown becomes a matter of survival.

While we must be better equipped to manage SMA in the fall, SMA has better equipped us to appreciate those things in life often taken for granted. What better time than fall to stop for a moment and consider that for which we are thankful?

We are thankful for our family. SMA is not easy. It requires a lot of time, energy, diligence, and advocacy. As we fight to maintain Getty’s health today, we must also fight for things she will need in the future. As soon as we encounter and overcome one battle, we must move immediately to the next battle. Through it all, we hold together as a family and work to be the best parents possible. When the day is done, the doctors have gone home to escape our persistent advocacy, and the evening respiratory treatment is complete, we spend time together as a family. We read, sing, relax, and simply enjoy our time together.

We are also grateful for our extended family. They give us love and moral support, help us achieve things we could not achieve without them, provide us respite, help us with housework, entertain Miss Getty, give hugs, and lend their ears. Thank you.

We are grateful for our friends. There are some truly wonderful people in this world who have given so much of themselves to love and support our family, especially in our times of greatest need. They didn’t have to do anything, and we didn’t ask or expect them to, but they did and they continue to do so. We are awed by their kindness and generosity. Our wonderful friends help us with our daily lives, provide us inspiration and encouragement, volunteer their time and effort, and open their hearts and souls to us. They do everything from bringing us food when Getty was in the hospital to just making sure Kate and I get out of the house now and then. Only one of us can get out at a time, we each cherish those hours here and there when we can grab a drink, enjoy a good meal, and just breathe for a little while. We truly appreciate our wonderful friends. Thank you.

We are grateful for our health. I know that statement drips with irony. Kate and I have the physical capacity and fortitude to help Getty. Given SMA, Getty is a happy and healthy little lady. Her lungs are clear, her nutrition is good, and her mind is sharp. She smiles, hoots, and giggles all day long. She loves her shows, music, books, iPad, slings, toys, animal brothers and sisters, and most of all, spending time with Mom and Dad. Special thanks goes out to all of Getty’s medical team, without whom Getty would not be where she is today; thank you for listening and being open minded about exploring new avenues in SMA.

We are grateful for the SMA community. They are a tremendous group of knowledgeable, strong, loving, devoted, supportive, and compassionate people. The SMA community really is a global family, without question. They have supported and taught us so much, from medical know-how to simply coping with SMA. When we got Getty’s diagnosis, we were shocked, sad, scared, and devastated. As they struggle to manage the crushing realities of SMA in their own lives, they offer wisdom, advice, inspiration, courage, and hope to others.  We, in turn, started the foundation to give back to them, to fight for a cure, and to share our knowledge, experience, and resources with newly diagnosed and other SMA families. Thanks to a handful of doctors who have devoted much of their practices to SMA and the families who help create and share best practices, the natural history of SMA is being rewritten, and the two-year average life expectancy associated with SMA is being thrown out the window.

Personally, I am grateful to have Kate in my life. SMA comes with more than its share of hardships. On top of everything else life throws at us, we have had to learn to be our own doctors, nurses, and respiratory therapists. Getty has been admitted to the hospital for surgery and for sickness. We have seen too many families suffer and grieve with the loss of a child. We have witnessed families shattered by SMA. We see too many families struggle for answers and children, for help. Through the exhaustion and emotional toll, Kate has never failed to do right as to Getty and to do everything possible for our family. When she could easily justify time to herself, she finds the time and energy to give her love and support not only to Getty and I but also to the Foundation and to fellow SMA families. Kate is truly a remarkable and loving person, and I am grateful to have her as my wife and Getty’s mother.

People are facing so many challenges in these times and have plenty to be upset about. I encourage you to embrace the autumn and the ones you love; take a few moments to consider and celebrate those things for which you are grateful. Cheers!

An Unscientific Opinion

From Kate:

November 12th was World Pneumonia Awareness Day. I read an article about how children are dying at alarming rates due to pneumonia and it brought back some lingering thoughts I have always had since Getty’s diagnosis. I know that many third world countries are suffering and need vital support to combat pneumonia, but I also wonder if it possible that more SMA children are out there but are not diagnosed in time.

Since truly digesting Spinal Muscular Atrophy, as a mother, I tried to really find some kind of clarity. I needed to know why I had never heard of this disease. I needed to be convinced that Getty was not just victim to a “orphan” disease. I needed to figure out why awareness of this horrible disease is lacking nationwide. When I start sleuthing, I didn’t stop until I was satisfied. So in my unscientific opinion this is what I came to.

I think there is more SMA in the world than we realize. I can’t help but think if children were accurately diagnosed then perhaps there would be a bigger urgency on a government or national level to find a viable treatment or cure.

Let me give two scenarios that stick in my head that I believe, again unscientifically, might actually be a misdiagnosed case of SMA.

1) Getty was diagnosed when she was 4 months old. She has always been a very healthy and robust child. Let’s say, hypothetically, before her diagnosis she got sick and it turned into an aggressive upper respiratory pneumonia. Mark and I would of taken her to the hospital and let the doctors do all they could to get her “through the woods”.  Let’s say they were unsuccessful. For whatever reason the pneumonia was too much to handle. Getty would have passed due to pneumonia. I can tell you beyond a shadow of a doubt, the conversation in the hospital would not have evolved into a discussion about genetic diseases and Spinal Muscular Atrophy. We never would have known that SMA was the catalyst to aspiration pneumonia. We would have gone on with life without even realizing that we were both carriers of the #1 genetic killer of young children.

2) Since Getty was diagnosed at 4 months, with me as new mother stumbling through parenthood, I could have accidentally suffocated her. Sudden Infant Death Syndrome (SIDS), from what I have learned, is still an unexplainable sudden death of a child. So what does this have to do with Getty?  We know SMA restricts lung capacity of children, so they rely heavily on the diaphragm to breathe. So let’s just say, hypothetically, I left Getty to sleep on her tummy in her crib before her SMA diagnosis and before she got a pulse oximeter to monitor her vitals at all times. We would have never known if her oxygen levels dropped and doctors may have attributed it to SIDS. Again we would have never known that SMA was the catalyst for her passing.

I am not trying to suggest that all cases of infant pneumonia or SIDS is to unidentified SMA child, but can you see how in some cases it might? These are just my unscientific thoughts, but I figured it was something to at least throw out there for discussion.

I wonder if children were diagnosed with SMA earlier and if there was more awareness, perhaps we would see a bigger push for treatment and cure of the #1 genetic killer of young children. Perhaps people would be aware that they have a 1 in 40 chance of being a carrier. Perhaps SMA would no longer be considered an “orphan” disease. Perhaps SMA would be cured.

Move Over Mom and Dad, I Am Watching Sesame Street!

From Kate:

With any toddler, I would guess that there are just not enough minutes in the day. Feeding, napping, “school”, reading, play time, bath, music, etc. Fitting everything in never seems to be in the cards.

Since Getty is getting older, I am trying to really find engaging things she enjoys. Before, playtime was more of a mom based decision. I would do activities her based on what I thought she would enjoy. As long as I didn’t hear any noises to tell me otherwise, I just assumed Getty was enjoying it. She does a very good job of non-verbally telling Mark or I when she likes and doesn’t like something for the most part. Sometimes it is seriously apparent when she doesn’t like something. She will pucker her whole face up and start to cry. It isn’t what I would call a real cry, more of a “Getty” cry. “Don’t make me step this up a notch”, kind of cry. 🙂

So as she has gotten older, I think in some ways she is growing out of some of the things we do, but that is the hardest thing to judge. I try to do activities with her that are at age level, but I am finding that she is literally bored doing them. Take last night for instance. We have animal flash cards to help her recognize and learn her animals. We are also working on her eye gaze skills, so as she develops, she can use her eyes to tell us what her needs are. A slow and steady process indeed, but will be so beneficial for all of us in the near future.

Okay so the flash cards. I would hold one up at a time and say the word as she is looking at the card. Then I would take two different cards and have her pick with her eyes, which animal I am asking for her to look at. I’ll just say this much. She knows how to do it, but she takes to another level, she gives me the teenager eye roll as if to say, “The cow is on the left, duh!” So instead of stopping, I continue through the activity and quickly move onto something more challenging before the sassiness escalates.

The books we read to Getty are also not age appropriate, it just seems as though her brain, while not at all affected by SMA, is working overtime and this mom needs to catch up. 🙂

Which leads me to Sesame Street.

Mark and I cut off our cable about two years ago. It just wasn’t worth the money and we were finding that we weren’t really watching much TV anyway. We recently got it back, not quite sure why, but it has been nice to have some extra channels, so after Getty is sleeping, we can kind of veg out for a little.

Well we found out that we have this feature called On Demand. 🙂 I know we are a little late. But anyway, the “Kids” feature is terrific. I was flipping through the shows and stumbled upon Sesame Street. My ears perked up and I thought, “well maybe Getty might like this, but is she old enough to understand and enjoy it?” Um………yep!

I turned it on and I am not kidding you, she instantly perked up. She laughed with such great timing. She was instantly engaged with the letter of the day, which ended up being the letter “O”, no kidding. And wouldn’t you know it, the first word was an animal named, “owl”. This couldn’t be any better.

Getty enjoys the characters, the constant singing and the quick snippets of number and letter learning. She also likes the classics, which makes Mark and I happy.

So now we have found something new, something challenging in her daily routine, and something that we can all take part in … or at least I thought. You see when Sesame Street is on, well, Sesame Street is on! Mom and Dad don’t seem to exist. Which you know is kind of a good thing right now. It has been difficult to find ways for Getty to be completely independent.

She has her iPad and her arm slings to manipulate the tablet. She has a really cool mirror that plays music to her and teaches her colors. She can do art on her own, again with the help of arm slings. Music she loves, but we are usually doing that together. She loves playing with musical instruments, and we are playing together as a family. Again it is always nice to see her have some independent time on her own, where I am not totally up in her “grill”.

So last night we watched Sesame Street together. I asked her if she was enjoying herself and she gave me the teenager eye roll, but this time is was different. It wasn’t a “this is so boring” look, it was more of a……” Mom! I am watching Sesame Street!” And that felt awesome!

Oh and if you were wondering what monsters she likes so far, it seems as though Super Grover and Elmo have her heart right now. 🙂

Sometimes You Just HaveThose Days

From Kate:

It is not often that I go back and look at pictures before Getty was diagnosed. For several reasons, it is easier to live in the moment and to absorb every minute with her, instead of reflecting on the past. Don’t get me wrong, she was just as cute of a peanut as she is now, but there is still quite a bit of sting that seems to come over me when I do see some earlier pictures.

Well I had that day today. I really should of kept myself more busy because I had a little time to go down memory lane and I was stopped in my tracks with grief. I was looking at her pictures and thinking about all of the things we didn’t know yet and how our lives were literally going to be turned upside down within a month’s time.

Getty would have a team of specialty doctors, Mark and I would be frantically trying to learn all we could about this “random” genetic disease. Constant doctor appointments, blood work, Getty would start to lose her swallow, she would never lift her head, she would never walk, surgeries, shots, and the elusive RSV winter season we had heard so much about.

So as I looked at some of her pictures I kept asking myself, “Why do they hurt so bad?” I guess the obvious answer to me is that they are all a reminder of how life can change in an instant. You go one day knowing you have a healthy child to the next, when you are told there is no treatment or cure and your child will likely die in less than 2 years.

To attempt some comic relief, I tired to remember what my concerns were as a new mother at that time. I guess how to balance career and motherhood? How to remedy gas or butt rash? I even think at one point I was actually concerned about losing the baby weight. That sounds so ridiculous now. Who the hell cares?

Yes life can change in an instant, perhaps people who can understand what that must feel like are those who have that reality. I never took that phrase seriously. I was a new mom, great career, house, cars, food, husband, dog, savings and insurance. “Um…. okay right like something significant is going to happen to me. Look at the safety net I have created. What on earth can change?”

But the real answer I finally found in my heart today was that those pictures were not just a reminder of how life can be altered in a moment, but it was more of a reminder of the innocence we all lost when Getty was diagnosed. This disease robed us of our innocence. Carefree doesn’t live here anymore. Spontaneity doesn’t live here anymore. Freedom doesn’t live her anymore. We have to be constantly alert, advocating, resubmitting, fighting, manipulating, stressing, diligent, and any other word that would describe fighting every step of the way to make sure Getty gets everything she needs to be healthy and happy.

Notice I never said patient. Patience doesn’t get you anywhere. Patience causes delays and delays can mean life or death.

No, patience is only reserved for the little lady of our household. Getty gets all of it and deserves every ounce of it.

So I had that day today. I got to grieve a little more today and afterwards I felt a lot better. The pictures aren’t stinging like they once were and so I guess what I have done perhaps is stopped allowing those pictures to keep my feelings hostage. I wish my feeling had not kept me from looking at these pictures because they are beautiful and hold such wonderful memories.

Getty’s first bath, it is amazing she was that small. I think she even fit into one of my mixing bowls. Getty and I watched pretty much every World Cup game together in the summer of 2010. Whether she was watching or sleeping, I just enjoyed holding her. Our favorite team is England, we share the same boyfriend, John Terry, so of course she needed her own jersey.

Very good memories.

Halloween Costume Results!

From Kate:

I want to thank everyone for submitting pictures. I was asking for the most creative and I was seriously blown away by all the outstanding costumes. I asked the help of our entire GOF board as well as a few of our wonderful volunteers to vote their top three. Well as luck would have it we had some ties that needed to be broken, so we left that huge decision up to the lady in charge around here, Getty. I made a few paper squares and I put her arm in one of the supportive arm slings. The one she chose first  became the winner of the contest and then so on.

We would like to congratulate all of you little sweet peas for participating. It is obvious that your parents are just over the moon about you, MJ the world loves you and all of your costumes were awesome.

So here we go!

Congratulations Mr. Gavin, you are the winner of the Halloween Costume Contest. Miss Ella you have won 2nd place. And Mr. Roman you have won 3rd place.

Here are their costumes.

Here is a collage of all the kids that participated and one dog named Chance. 🙂

Update: We had minor tech glitch, so here are two more. Sorry it is not proportional to the others. I am still trying to figure out the photo program Picnik. 🙂

We hope you all had a great Halloween. Miss Getty did as well. I did try to refrain from buying another owl outfit this year, but I couldn’t resist when I saw this one. So next year, I will just let her decide what she wants to be. 🙂