2015 FSMA Conference

So we move forward.

After receiving news that Ella has not qualified for the clinical trial we simply move forward.

Each year, Families of Spinal Muscular Atrophy (FSMA) holds a conference that invites families with children suffering from SMA, the doctors who treat them, and the researchers who work tirelessly to find viable treatments and a cure for SMA.  It's an incredible experience to say the least.  We've attended one conference since Ella was diagnosed.

During the short time we were there we found it to be one of the most special and enlightening experiences.  We found ourselves surrounded by families that are going through exactly the same things we are going through.  They understand, on a level that is elusive to most, the feelings and challenges we face as we journey through life with SMA.  The common ground that we share draws us closer to one another, nurtures friendships, and offers us unparalleled support. 

The kids, too, walked (or rolled) away from the conference with a new found respect for one another. They began to understand, on the simplest level, the realities of SMA; how best to navigate through their daily lives; how best to practice empathy for one another; how best to be a part of a family that has the specific challenges SMA presents.  

There's a reason, however, why the conference is an annual event.  

Through diligent research the scientists are always moving forward.  The conference offers them a chance to connect with families and doctors to explain their advances in research as well as listen attentively to both parties.  

Doctors have different approaches in the ways in which they view best practices for their patients.  The families can get a better idea of differing medical opinions and even find a "good-fit" doctor for themselves (we found Ella's orthopedic surgeon at the 2013 conference).  

Families find new ways to care for their kids and themselves.  The siblings are reminded of what they learned about before and are given a chance to renew their knowledge while simultaneously learning new skills and strategies.  As they grow older, their responsibility within the family grows...the conference provides an outlet as well as an inlet for them...a way to express themselves safely and empathetically while also helping others with their feelings and struggles.  It's a process that grows with them as time passes.  The conference is such a wonderful way to empower them.

And Ella.  The conference is probably most important for her.  It provides an atmosphere where she can identify with other children and adults who have SMA.  She is afforded the opportunity to see, talk with, and connect on multiple levels with the struggles she faces alongside her peers with SMA.  A disease that is uncontrollable must be hard for a kid to handle...knowing that other kids have and do experience the same lifestyle is paramount to her positive outlook on life.

We'd love to attend the conference this year in Kansas City, MO.  It runs from June 18-21 and is a 5-7 hour drive.  Of course, we would need some help in terms of financing such a trip.  

If you feel that you might be able to help us finance this year's trip to the 2015 FSMA Conference we have a fundraising page set up specifically for that purpose.  

From conference registration, hotel, meals, and driving expenses our goal of $2,000 has been set.  

To donate to our trip please follow this link:

Click Here to: Donate for the Casten's to attend the 2015 FSMA Conference

Thank you so much for taking the time to read our blog and for supporting us in the many ways that you all do each and every day.

Michael, Lindsay, Ava, Henry, & Ella 

Please feel free to share as you see fit!

My Own Clouds...(by Michael)

I know what I say.

I tell myself that there's a reason for everything.  I repeat in my mind that we must go forward.

Now, however, my thoughts feel cold and my spirit erased. There's no other way to describe it.

I know what I say...and I understand that this, too, shall pass. Yet for the moment, in the moment, a stifling numbness takes over.  A lack of control builds up inside.  A realization that while we're not any worse off, we're still looking for the light.  

It seemed as though the light glimmered on our lives.  In a way, I suppose it did.  That twinkling of hope held an eternity of promises.  It mesmerized us; sang to us; brought us to it.

Ella had an opportunity to be part of a clinical trial for an extremely promising medication that may hold a treatment for SMA.  The drug is called SMNRx and its function is to direct the back-up genes (that many people with SMA have) to produce full functioning SMN proteins (as currently the back-up genes only produce about 10% of functional SMN proteins).  It has been quite successful up to this point in many animal and human cases.  It's widely known in the SMA Community and holds us all eagerly on the edge of our collective seat as we all wait and watch.

Ella's doctors and therapists felt she was an absolutely wonderful candidate for the trial...we did too.  With that in mind we spent many hours at Lurie's Children's Hospital partaking in the screening process.  She did wonderfully. One of the exclusion criteria has to do with the degree of scoliosis present...Ella's degree of spinal curvature was a smidge higher that the sponsor wanted yet they still had us engage in further screening criteria.  They also asked for an opinion from her orthopedic doctor and another x-ray.  Her orthopedic doctor gave her the "go ahead" to participate and even produced an x-ray that showed not only a lesser degree of curvature, but spinal flexibility as well.

Not good enough.

When we received the call that Ella was not accepted the frigid weather outside seemingly tore through our souls. While we prepared for this outcome the reality of it whipped us back to the time when we first received her diagnosis.  It's a feeling that simultaneously presses hard into you and pulls you apart.  It leads you to a place that is better left unattended.  It strips you of knowing that everything will be all right...somehow; some way; some time.

We never told Ella why we were going to Lurie's all those times during the screening.  We felt it best not to place expectations in her head...and at the same time we tried not have any in ours.   It's tough, though.  She's our little girl. She's our Squishy.  She's ours.  And we want only the very best for her as she travels through her fragile life dealing daily with SMA. 

We seek earnestly for the trial to go well with those enrolled so that all may someday partake in the healing medicine science will hopefully...one day...offer.     

I know what I say to myself and I do believe it...  

...there is a reason for everything...whether I can see that reason through my own clouds or not.

Ella Sabine Casten
February, 2015