Getty Owl Foundation

A Lovely Package

From Kate:

It has been a week since the neurologist diagnosed our sweet little Getty. It is amazing to think we have only been on this journey for such a short time.

My head felt very heavy today. Just racing thoughts really that I couldn’t seem to shake. We were getting ready to take a trip to Grammy’s house and I noticed two packages on the porch. One was from my dear friend Takoa and her sweet children. Getty and I thank you for such thoughtful gifts. Bath time will be even more fun now.

Another package was a huge box from the Families of SMA organization. It was a care package with tons of fun stuff for Getty. Pillows, toys, blankets, etc. Such a thoughtful thing to do for us. There were letters written to Getty and us with heartfelt wishes and comfort. I am just blown away by their generosity.

You know a week ago if someone asked me what FSMA was I would have looked at them with a puzzled look and said no. Today, in a weeks time I would say that they have become an extension of our family and friends. What great people fighting for what they believe in, their kids.

Thank you all for your wonderful words of support. Mark, Getty and I are so fortunate to have the love of our family, friends, and the generosity of complete strangers. There is so much love in the world. We are all so touched.

Don’t Sweat the Small Stuff

From Kate:
Well I certainly know where Getty got her love of naps. The two of us snuggled next to each other this afternoon for a hardy three-hour nap. Watching her sleep makes my heart just melt. She looks so peaceful.

Baby Leyton came to visit along with his mommy Stacey. We took a nice walk around the park. It was nice to get out and have company. Thanks Stac.

Last night I got a chance to read the guest book and although I cried, it was not a cry of sadness, it was a cry of joy. It is amazing to me that our little girl has had and will continue to have such an impact in people’s lives like she has on us.

Getty came into this world with laughter and curiosity. She has always seemed to me to have an old soul. A wet diaper or slight hunger never seemed to bother her because she knew we would take care of it. She seems to live by the motto, “don’t sweat the small stuff.” Just one happy little baby.

Back to Work

From Mark:

I’m struggling to get back to work today. I’m still in a daze although David at FSMA and others have said Kate and I seem to be “way ahead of the curve” as a newly diagnosed family in terms of knowledge and inner strength.

I guess, for us, knowledge is power.  Our research and communication with so many caring and knowledgable people is really helping. We don’t feel lost, in the dark, or alone.  We draw strength from the courage and generosity of others.

I had a nice initial phone conversation today with a local FSMA mother named Colleen.  She and her husband, Glenn, had SMA1 twins who passed.  Now they have healthy twins.  We will set up a meeting in a week or two.

Our friend, Stacey, came over with her baby, Leyton, who is about Getty’s age. We have an entirely new perspective on things watching Leyton vigorously wiggle and kick as he lays next to Getty.  I held his little hand, and the difference between his strength and Getty’s is truly remarkable.

Thank you, Stacey, for your friendship. We again thank all those who have offered their kindness.

Bath Time!

From Kate:

We have found a very exciting activity for Getty. Since gravity isn’t kind to her little legs, we found the bath to be a haven for kicking and relaxing. She and I have decided that “bath time” will be every night before bed and perhaps every morning after feeding. She loves moving her legs in the warm water. Heck I don’t blame her, I love baths as well.

In the last few days, she has met a whole bunch of new people who are here to help her and make her more comfortable. There was a moment yesterday when two neurologists and two geneticists were looking at her on the doctor’s table and, as her mother, I was nervous.  It seemed like too much. Then loud giggles came out from the table and I knew she was having the time of her life. It was like she was saying, “Hi my name is Getty, what is all the fuss about?”  Oh my heart grew so warm.

Today she got to spend the day with her dad and mom and her grammy and papa. We all got a chance to help her excercise her legs and arms, as well as giving her all kinds of smoochies and hugs.

It was a great day.

Meeting with FSMA President

From Mark:

David, the President of the Northern California Chapter of FSMA, drove from Santa Rosa to visit us at our home. He and his wife, Lisa, had a baby, Matthew, who was diagnosed with SMA1 at age 1 month. Matthew passed in 1998 at age 6 months.

David is so wonderful and gracious. He talked to us for 5 hours and answered every question we asked.

He gave us his basic summary of SMA. He said cells need proteins to work and survive. SMA causes the body to produce less of this special protein than is needed to allow the nerves to communicate with the muscles. The muscles get less signal than is needed, causing them to lose tone. The loss of muscle tone causes a loss of strength and causes SMA babies to be “floppy.”

The timing of SMA manifesting in infants is important because it essentially locks the baby into the level of strength available at the time of manifestation. It is as if the amount of power available to run the body remains fixed while the body continues to grow. Eventually, the available power is not enough to run the machinery.

Children or adults who are older when SMA manifests have already developed enough size and strength to be less affected by SMA. SMA2 kids typically have a later manifestation and longer life expectancy. SMA3 usually manifests in adults and may not affect life expectancy much, if at all.

Scientists are trying to find a way to get the body to produce more of this special protein in SMA patients. Apparently the body needs only 25% of its production capacity of this protein to get by. Hopefully, some day, they will find a cure.

David also gave us some great ideas and helpful hints, like tying balloons to Getty’s arms and legs to reduce the weight load of her limbs. This allows her to play with the balloons under her own power. He also suggested letting her play with cotton balls and scrunchy ribbon.

He recommended lots of water therapy. We noticed yesterday that she is able to move her legs around under her own power when her legs are under water.

He also chronicled his family’s life from Matthew’s birth through his passing and beyond. He was very open and honest about the course of the SMA, the symptoms over time, the quality of life decisions he and his wife had to make, the details of Matthew’s passing, the emotional difficulties involved, and their decision-making process when it came to having more children.

He told us about FSMA. He gave us the contact information of other SMA families who are willing to share with us. He showed us some online resources. He talked about the double grief suffered by grandparents.

In all, we came to appreciate his family and FSMA even more. He is a remarkable man with a remarkable family in a remarkable organization. Thank you dearly.