Getty Owl Foundation

Isn’t it time for awareness?

From Kate:

I was kind of in a fog as I was driving into work on Friday. Lots of thoughts racing around in my head. All things concerning Getty. Frustrations about doctors mainly and then also frustrations about the lack of awareness for SMA. When Mark and I were given Getty’s diagnosis we had not only had never heard of SMA, but we were equally in shock that this was a genetic disease and that we were both carriers. I remember instantly trying to rack my brain as to who in my family had this and no one came to mind, Mark as well. The diagnosis was terrifying, horrible, and feeling like we were both hit by a truck would be an understatement.

So as I drove on Business 80 to San Juan High School I did a quick, and mind you, unscientific experiment. I drove a bit slower than usual and allowed cars to pass me. I counted every 40th car and thought, “she could be a carrier.” I did this five times before I got to school.Is it possible that those same people I picked out  have been affected like my family? Is it possible that they already know they are carriers? Is it possible that they have absolutely no idea what could happen to them in the future? Too be honest I dwelt more on the latter. I don’t think the greater population knows what they are carriers of. And not knowing, unfortunately, has the potential to have them sitting in a neurologist’s office  in silence, in shock, and in disbelief that this is the diagnosis of their sweet and innocent child. It breaks my heart every time I think that we aren’t the first family affected by SMA and at this point we will not be the last.

A few statistics I grabbed from the amazing family of Gwendolyn Strong

http://gwendolynstrongfoundation.org/about_sma

SMA is the #1 genetic killer of young children.

SMA is estimated to occur in nearly 1 out of every 6,000 births.

1 in every 40 people, or nearly 10 million Americans, UNKNOWINGLY carries the gene responsible for SMA. Few have any known family history.

SMA is a pan-ethnic disease and does not discriminate based on race, ethnicity, or gender.

There is currently no treatment and no cure, but the National Institutes of Health (NIH) selected SMA as the disease closest to treatment of more than 600 neurological disorders.

Researchers estimate that a viable treatment and/or cure is attainable in as little as 5 years – IF provided adequate resources.

If more awareness happens and more money is donated to research, I can’t help but believe something incredible is possible. If anyone who is reading or knows anyone that has any media contacts to help give SMA a voice, thank you in advance. I will post some incredible foundations that are currently doing an awesome job raising awareness and money for research.

http://www.sophiascure.com/

http://gwendolynstrongfoundation.org/

http://www.miracleformadison.org/

The GETty Crafty Craft Fair is growing!

From Mark:

The GETty Crafty Craft Fair fundraiser on Oct. 16 in Sacramento has over 70 vendors, music, raffle prizes, Good Day Sacramento television coverage, and now 92.5 FM radio coverage. The generosity of others is amazing!

Thank you to Stacey Ball for coordinating the whole thing and for anyone and everyone who participates in any way.

For more info., please check out our Upcoming Events!

HOOT! HOOT!

Welcome to Holland?

From Kate:

It has been difficult these last few days for our family. Trying to just sort out so much information in such a short amount of time has been testing and frustrating. Making sure the medical team is on the same page with our needs and wishes has been so incredibly surreal. Like Mark said before, who knew we would have to fight and arm ourselves so much to make sure everyone knows how to take care of our precious Getty. We are no longer in the fog, we get it, we know our next steps and if anyone gets in our way, oh boy I would hate to be that person. 🙂

I received a really inspirational parable that was given to me by a dear friend. Thank you Meri. I hope the author does not mind me sharing it. My purpose for sharing it, is because though I draw strength from the message, I believe it also has a universal message of acceptance and understanding. Those things we hold so tight perhaps need some re-evaluation.

Welcome to Holland by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability, to try to help people who have not shared that unique experience to understand it, to imagine how it would feel: It’s like this…..

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You learn some handy phrases in Italian. It’s all very interesting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?” you say. “What do you mean, Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy different guide books. And you must learn a whole new language. And you will meet a whole new group of people you would have never met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you have been there for a while and catch your breath, you look around…….and you begin to notice that Holland has windmills…and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy……and they’re all bragging about the wonderful time they had there. And for the rest of your life, you will say ….

“Yes, that is where I was supposed to go. That is what I had planned.”

And the pain of that will never, ever, ever go away……because the loss of that dream is a very significant loss.

But…….if you spend your life morning that fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…..about Holland.

And that is where Mark and I are. Holland is our new destination and we have bought the guidebooks, Getty is in her stroller, Cooper is leashed up and we are ready for a glorious walk together as a family.

You shouldn’t have to fight everyone to help your child

From Mark:

Getty and I are sitting here chatting and playing with the birthday balloons she got from the Phelps family. She loves them. We have a little helium tank from the party store, so I can keep them filled for days. They are tied to Getty’s wrist, and she loves moving them around.

Meanwhile, I’m trying to find out what we need in terms of equipment and supplies. We are applying for assistance and the person in charge over there asked us to tell them everything we need. We know SMA kids need plenty of equipment in general, so, pardon me if I think it’s a bit crazy to ask a newly diagnosed SMA family to provide a comprehensive list of everything we expect to need.

We don’t know.

I am asking the SMA community for help on yet another battle. There’s no other way to say it but, “This sucks.”

I always thought if someone gets sick, you just go to the doctor and they tell you what you should do. You would think the potential sources of equipment assistance would be readily available.

Nope.

This whole thing is just one exhausting battle after another.

G-Tube Battle

Our Kaiser gastro never told us we should be getting a G-Tube ASAP. The only reason we started having that discussion with her is that it happened to come up in passing in a conversation I was having with another SMA parent. I wrote the gastro an email asking about it, and she said it was recommended ASAP but she didn’t want to overwhelm us by bringing it up in our first meeting with her.

The problem is our next gastro appointment isn’t scheduled for another 2 months and the G-Tube procedure likely wouldn’t be scheduled for another month on top of that. So, our gastro was apparently OK with a three month delay on a procedure that should be done ASAP.

Call me crazy, but when the average SMA1 baby loses swallow function on average by age 6 months, and our child is 6 months old, only gets weaker with each passing day, and the average life expectancy is only 2 years … you don’t screw around for 3 months with procedures that are recommended to be done ASAP!

Nissen Battle

Further, our gastro and our Kaiser surgeon don’t agree on the Nissen recommendation. Now, on top of everything else, we are in a position of having to gain medical expertise on the Nissen procedure just so we can attempt to resolve conflicting recommendations between two of our doctors.

Surgical Nutrition Battle

In the process of learning about Nissen, the SMA community told me normal IV fluids (IVF) are not recommended for SMA babies during surgical procedures, and that we should fight to get her something called TPN instead of normal IVF. Apparently, when SMA babies fast for surgery and go without sufficient fuel in their system for more than 4 hours, they lose muscle mass that they will never get back. They are already weak, and any loss of muscle mass is a bad thing. So SMA babies apparently need TPN instead of IVF during the G-Tube/Nissen procedure.

I wrote our gastro about it, and she says IVF should be fine. Now we have to resolve the medical issue of the appropriate SMA nutrition during surgery. I wrote an email to Dr. Schroth, an SMA expert physician in Wisconsin to try to get current recommendations for SMA surgical nutrition because I may need to bash our gastro over the head with a medical opinion from a real SMA expert.

Social Work Battle

As I mentioned, we are also trying to get approved for government and private benefits to assist us with some of the anticipated medical equipment needs. We have a social worker through Kaiser who is supposed to be an expert at this sort of thing.

We applied for assistance though one state agency, but the agency denied us benefits. We happened to bring it up to another SMA family, and they said plenty of SMA families get that government benefit and the agency should not have denied us. In other words, our Kaiser social worker seems incompetent as well.

Another battle.

Everything we are trying to do so far is a fight, and we’re just getting started as we shift from “meeting the doctors” to actually trying to implement care. We have heard from the SMA community that we need to be educated, we will soon know more about our child’s care than our doctors, and we need to be advocates for our child. We are learning just how true it is.

Itty Bitty Kitty

From Mark:

When I met Kate, she had two cats: Libby and Maggie. When we lived in an apartment, we added a rabbit: Sophia. When we moved into a house, we added a dog: Cooper.

One day, Kate went for a run and rescued two tiny kittens off the street: Poppy and Jack. Unfortunately, Jack had a fatal disease called FIP, and we had to euthanize him after knowing him for only a couple of weeks. Poppy, on the other hand, grew into a big healthy cat. We think he’s a Maine Coon, which is a large breed.

We intended to foster Jack and Poppy and to find them good homes. However, we felt obligated to disclose to potential new owners that Poppy’s brother had the fatal FIP disease. At that point, we realized nobody would want Poppy, so we decided to keep him.

By April 2009, we had three cats, a dog, and a rabbit, if you are keeping count. We had been feeding a stray pregnant cat in the neighborhood at the time. We called her Charlotte. One day, we noticed Charlotte wasn’t pregnant anymore, so we scoured the neighborhood looking for her litter. Charlotte had given  birth to seven kittens in our neighbor’s garage in an open suitcase. We volunteered to take them all in, and our neighbor probably let out a huge sigh of relief after we left.

That’s 13 animals in our little home.

We fed, fixed, vaccinated, fostered, and placed Charlotte and six of the seven litter-mates, leaving one little black cat with us. We named him Itty Bitty because he was the smallest runt.

We tried to place Itty Bitty for about a year and a half. Another neighbor took in Charlotte, the momma cat. We asked her if she wouldn’t mind taking Itty Bitty as well.

She took Itty Bitty into her home but returned him to us after only three weeks. Charlotte, his own mother, kept attacking him mercilessly. I guess Charlotte found her cozy little home and didn’t want to share.

We took Itty Bitty back and tried again to place him. We asked friends and family, we placed ads online, and we sought the help of a friend who does a lot of fostering. Local no-kill shelters were all exceeding capacity, probably with an abundance of foreclosure kitties.

Now, with an SMA child, we decided we could no longer foster Itty Bitty. We were left with no real choice but to surrender him to the local SPCA today.

We only knew him for about a year and a half, but we hope they can find him a good home.