Giving Up & Dreaming...(by Michael)

Every parent knows it.  You have a newborn baby and suddenly sleep takes on a whole new meaning.  

Babies wake up several times during the night for a variety of reasons; hunger, being wet, colic, figuring out the difference between night and day, etc..  As the parents we wake up with them, it's almost like a radar system...kind of neat how mother nature has built that into us.

This waking throughout the night lasts for a few months.  Parents become increasingly exhausted because of it being coupled with the stressors of the daily waking life; work, house, family, etc..

It's often quite obvious when a person has a newborn in the house.  They just look tired from the lack of sleep.  They get through it though.  They struggle and find their way through those months until finally the baby begins sleeping through the night.  Slowly but surely the parents' sleep pattern returns to normal and things move along.

For us we began this sleep depravity exercise in 2007 when Ava was born.  No sooner was she sleeping through the night we had Henry in 2008.  This was by design as we wanted to have our children be close in age with each other.  In June of 2010, Ella came along.  At that time we looked forward to when she would be sleeping through the night...there was a light at the end of the tunnel.

Enter SMA.  

When Ella was diagnosed with SMA in August of 2011 she was still taking her daytime naps.  As we all know, the little ones need those naps (as do the parents!).  Ella always slept well during her naps.  The nighttime sleeping however was a different story.  

When we reached the point when a baby should be sleeping through the night Ella did well.  But later, apparently as her disease progressed and after getting all of her medical equipment, it took her 1-2 hours just to fall asleep and in that time we would have to re-position her since she could not do it herself.  Once she fell asleep and we were able to get to bed, she would wake up at least 4-6 times a night to be re-positioned, needing an adjustment on one of her machines, or having her feeding tube cleaned out after her nighttime feed had finished (usually around 3 or 4 am).  So by the time we actually fell asleep (around 10 or 11 pm) to the time we had to get up for the day (5 am), we had been woken up several times.

We were exhausted.  

Recently Ella has given up her daytime nap.  It was a bit rough for her to make it through the day without the nap, but she definitely didn't want to take the nap anymore.  The rough part, however, was well worth it.  For when she gave up that nap she all of a sudden fell asleep within minutes of being put down at night.  She now sleeps peacefully and restfully throughout the night.  We still have to take care of her feeding at 3:00-4:00am, but that takes all of 45 seconds, and it's a one time wake up (like having to go to the bathroom in the middle of the night).  There is the occasional wake up for other reasons but that just goes with the territory of having kids; Ava and Henry sometimes still wake up and we have to be with them as well.  Surprisingly to us, the SMA, now that Ella has given up the nap during the day, does not seem to rear it's ugly head overnight anymore.

But something strange occurred.  Something that we didn't really realize until just recently.  Something that has made quite a difference in our lives.

Dreams.

As we were getting up with Ella for such a long time before she gave up that nap we were actually disrupting any dreams we were having.  We didn't really realize it though, probably because we were simply too tired. In fact, looking back it almost feels like we weren't dreaming (although I'm sure that's not the case)...but the dreams were never remembered, or "complete".

Now that we are actually able to get a good night's sleep, something that has eluded us since 2007 (wow...six years!) the difference in our energy level, attitude, and overall health is amazing.

We feel more focused, more in tune with reality, more socially-oriented, and more able to care for our kids.  We really missed the full-out dreams; the ones that seem to have a beginning and an end; the ones that seem to make no sense when you think about them but you know they made sense when you were having them; the ones that even if you get woken up once, you can find your way back to them; not to mention those dreams that you can't wait to tell about to somebody.

A piece of our lives has been returned to us, and with all that we have gone through and must go through in the future in terms of SMA, we are forever grateful to have our dreams once again.

Sleep tight little one.

Some Science Behind the News...(by Michael)

Dr. Brian Kaspar

The news that Dr. Kaspar's SMA research has been granted FDA approval to move forward with human clinical trials spread rapidly through the SMA Community and naturally found itself among the general public through Facebook, Twitter, blogs, emails, texts, phone calls, and personal encounters. To say that this news is big would be a gross understatement.  It's more than big...much more.

Dr. Kaspar and his staff are obviously major players in this development.  But there are more...many more.  From the very first person ever diagnosed with SMA to the latest; from the first fundraiser to the most recent.  The efforts, trials, sufferings, and triumphs of millions of people have brought forth this moment.  A moment of  increased hope for those afflicted with SMA.

I am grateful, as a parent of a child with SMA, for the goodness found in people.  From that goodness springs the seeds of hope.  And from that hope the seeds are nurtured.  That nurturing results in the seeds sprouting.  From there the seeds will flourish, bearing fruit in the form of life for anyone diagnosed with SMA.  The life they otherwise wouldn't have experienced.

Yes, there is much needed work still to be accomplished.  This is really only the beginning.  Hopefully the beginning of the end for SMA. 

So how does Dr. Kaspar's approach work?  Good question.

Here's a quick explanation:

• SMA is a result of a missing, mutated, or deleted gene known as SMN1.
• SMN1 produces a protein called SMN (Survival of Motor Neuron).  
• The lack of the SMN1 gene (and its protein) causes motor neuron death and in turn, muscle atrophy. 
• The SMN1 gene is located on chromosome #5.
• The cells that use the SMN1 gene are located primarily in the spinal cord.
• The spinal cord is protected by cerebrospinal fluid which (among other functions) creates a barrier (called a blood-brain barrier) against foreign intrusions.
• Therefore, delivering medications (or anything intravenously) to the cells in the spinal cord is extremely difficult, to say the least.
• Dr. Kaspar needed something that would act as a transporter (known as a "vector") for the SMN1 gene so it could be delivered to the cells in the spinal cord.
• A virus, known as AAV9, can pass the blood-brain barrier and enter the targeted cells.  [AAV9 is a "small virus that infects primate species and is not known to cause disease" {FSMA Compass; Spring 2012}].
• So now AAV9 can be the "vector" that is needed!
• They will inject a patient with the AAV9 virus (that is "carrying" the SMN1 gene) so it "infects" the target cells in the spinal cord.
• The AAV9 virus itself will not harm the patient.
• The SMN1 gene that has been "carried" in, however, reproduces itself naturally in the target cells.
• Once the cells have the necessary SMN1 gene, the required SMN protein can be produced and the motor neurons will be able to survive; hence no SMA!

Below:  "A new gene is injected into an adenovirus vector [such as AAV9], which is used to introduce the modified DNA [such as SMN1] into a human cell. If the treatment is successful, the new gene will make a functional protein."

Picture courtesy of Genetics Home Reference (http://ghr.nlm.nih.gov/)

Implications:

• For newly diagnosed patients, this would be a cure since doctors could introduce the "new" SMN1 gene immediately and halt any motor neuron death.
• For people who have already been diagnosed this would hopefully stop any further progression of the disease...this theory is yet to be verified.  Only time will tell.

What Now?

For the SMA Community this is a time of holding our collective breath.  We wait.  We pray.  We hope.  We watch every aspect of the human clinical trials.  We also continue to live our lives with SMA.  For so many, much damage has already been done to our kids.  Sadly, SMA will still take the lives of many people of all ages before it is all said and done. 

If this treatment/cure proves to be everything we hope it to be, there will be many people who have SMA now that will still need a great deal of assistance on many levels.  What drives the hope, however, is that those people with SMA today will hopefully live a longer life than they would have if not for Dr. Kaspar's research.

The first part of 2014 will be a whirlwind of emotions and anticipation.   Only time will tell and only God will reveal.

...Until They Find a Cure...

The SMA Community is tight-knit; we celebrate our accomplishments,  mourn our losses, lend an empathetic ear, and problem-solve with and for one another.  We laugh with, cry with and care for each other.  We may not always agree.  We may not always put our best foot forward.  We do however, rely on each other as we share the common thread of SMA.

The overwhelming need to "save" your child(ren) when they are in danger, any danger, is one part of parenthood that comes naturally.  It's a powerful need, riddled with emotions, driven by love, and pursued by a sheer will for the survival of your child(ren).  

We can recall having a conversation with each other, just hours after we knew Ella had SMA.  We were sitting at the bottom of our stairs on the floor.  Ava & Henry were with Gramma & Grandpa since we had an appointment that day for Ella with a neurologist. We sat with Ella as she struggled to move in a way that a 14 month old should be able to move.  The house was silent as were we.  Thoughts of what this disease will do swirled endlessly in our minds.  We realized something then, "Our job is not to save her; it's to keep her alive until they find a treatment or a cure."  With tear-filled eyes we looked at one another and then at our happy little baby and knew what we had to do; everything in our power to care for her.

Fast forward to Sept. 20, 2013.  Through the SMA Community we find our that one of the most promising and exciting research for treatments and a possible cure for SMA has just been granted permission by the FDA to begin human clinical trials.  While there are several research projects occurring  and even some of them in clinical trials themselves, this particular research is extremely promising.

Dr. Brian Kaspar has been working tirelessly with his staff at Nationwide Children's Hospital on a "Gene Therapy" approach to treating/curing SMA.  His research has been granted the green light to start human clinical trials and will do so in early 2014.  These initial trials will be limited to children with SMA Type 1, ages birth to 9 months. 

We know that SMA is a result of a defective, mutated, or deleted gene called SMN1 (Survival of Motor Neuron) that is located on chromosome #5.  This gene is housed in the spinal cord.  Getting to this area presents great difficulties   Dr. Kaspar, however, has figured out a way to introduce SMN1 to the correct physiological place by "infecting" the cells that house the gene.  He will carry the SMN1 that he wants to introduce to the chromosome by way of a virus.  In theory, this virus will infect the cells without any side-effects and in the process will deliver the needed SMN1 gene to those cells.  In short, he is replacing or introducing a new SMN1 gene that will then allow motor neurons to survive.  If motor neurons survive then SMA is no longer present.  Brilliant.

What does this mean for the different "types" of SMA?  Of course this will benefit those kids who are just being diagnosed the most.  The earlier you introduce the new SMN1, the more motor neurons can be saved.  For kids and adults who have already experienced motor neuron loss the new SMN just might halt the disease where it stands currently.  There is a hope that through the complexity and sheer miraculous nature of the human body that the neurons that are still "alive" just may branch out to muscle fibers and "reconnect" allowing for increased movement and strength.  

The SMA Community has stopped for a moment to fully take in the implications of this research as it is now poised to enter human clinical trials.  Hope has never been higher.  Now, more than ever, the SMA Community asks, humbly and with great anticipation, that anyone who has ever supported the SMA Community in any way joins us in collectively raising awareness, raising funds, and raising increased support for SMA research.

The success of Dr. Kaspar's delivery approach into the spinal cord will not only benefit those afflicted with SMA, but will open doors for hundreds of other diseases and disorders that previously were "unreachable" simply because of their location in the human body.

This is big. 

Meeting Dr. Brian Kaspar at the 2013 FSMA Conference

Below is the entire statement from Nationwide Children's Hospital:

FROYO, Fashion, & Friends

We are really excited to announce that the first fundraiser to help us provide Ella with a modified house will be hosted by Skinny Sweet Frozen Yogurt in Glen Ellyn, IL (see address below).

From 12:00 pm - 9:00 pm on Saturday, October 12th Skinny Sweet will donate a generous 20% of all sales when customers mention "Ella Casten" while purchasing their delicious treats.

We visited Skinny Sweet twice over the summer.  The place itself is a treat to step into.  The vibrant colors, contemporary decor, and smiling faces all bring the incredibly delicious experience full circle.  It's set up as a self-serve venue.  You only pay for the weight of what you decide is in your bowl; and the choices are endless!

The frozen yogurt flavors can be mixed and matched any way you desire.  From there, you are presented with a vast array of fresh fruits, classic toppings, and mouth-watering candies that compliment the creamy yogurt. 

 

Kids absolutely love creating their own dessert treat and have even more fun eating the masterpiece!  

And to top it all off the "bowl of delightful dessert" is easy on your wallet as well as your waist!

If you have yet to try Skinny Sweet Frozen Yogurt (FROYO) please mark your calendars for Oct.12, 2013 from 12-9 pm. 

Come on in, bring the family and your friends, enjoy a wonderful, exhilarating treat and mention Ella's name!

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So what else is new on the fundraising front?

  ellaWEAR Party:  Our first ellaWEAR Party will take place on October 22, 2013, followed by a November 5th & 22nd party!!  New jewelry has been ordered and plans for  great get-togethers are in the works.   

This type of fundraiser is a really easy way to help raise money for Ella while also providing yourself with free jewelry.  In addition, your friends will enjoy a fun social gathering coupled with beautiful jewelry to purchase for themselves as well as for gifts.

The conceptual aspects of the ellaWEAR Party that we are most proud of are:

• We feel highly connected to the fundraising part of our caring for Ella as proceeds from every ellaWEAR Party will be directly donated to the "new house" fund.
• We are taking our logo to its promise:  simply stylish. simply jewelry.  Everything about the ellaWEAR Party is simple...no pressure, no quotas, no problem!!

Please consider an ellaWEAR Party for you and your friends!

For more information click on the following links:

• Mama Bracelets ellaWEAR Party Website Page
• ellaWEAR Party Questions & Answers Blog

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Music Fest:

A friend has stepped forward asking us if he could put together a "music fest" for Ella.  What a great idea!!  

This is in the early stages of development but when we spoke last he had already contacted several bands and they agreed to participate!  He said he is now in the process of finding a venue.  His thoughts are to have the fundraiser event in the Spring of 2014.  We are so grateful.

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More Information

• Skinny Sweet FROYO Facebook Page 
• Skinny Sweet FROYO of Glen Ellyn Website
• Skinny Sweet FROYO's address/phone:

545 Roosevelt Rd

Glen Ellyn, IL  60137

(630)-793-9108

• Caring for The Castens Facebook page
• Caring for The Castens Donation Page

How's ED? (by Lindsay)

Within the past month, several people have asked me how I'm doing with ED.

And by ED, I mean "eating disorder".  

For those of you who are new to this blog, I struggled with an eating disorder for a while after Ella was diagnosed with SMA.  It got to the point where my health was deteriorating enough that I needed to be admitted to an intensive inpatient rehabilitation hospital for a month last summer.

Severely limiting what food went into my body was a way for me to take control of something.  Controlling something when I felt so out of control with Ella's disease.

Anyway, I've been out of treatment for over a year now.

It's been a roller-coaster of a recovery process, that's for sure.

But I can honestly say that I am the closest to "recovery" than I've ever been since I walked out of the hospital.

Yes, I still struggle.  Daily.  While I was in the hospital I was told that I will probably never recover completely, as an eating disorder is a way of thinking that is incredibly difficult to overcome. Especially given the circumstances surrounding my eating disorder. 

But I'm better.  A LOT better.

I've learned and know that being healthy is so much better than being stick thin.  I'm happier.  I have energy.  I don't feel sick (or look sick for that matter).  

But there isn't a day that goes by that I don't have some type of ED thought running though my mind...

"How many calories are in that?"  "I just want to lose 5 more pounds," etc.

But then I also find myself thinking things like...

"I feel good." "It's so much better to be healthy."  "Almost every woman has some part of her body that she's not happy with, and that's ok."

In the first 6 months after being discharged from the eating disorder program at Linden Oaks, I gained 40 pounds.  After that, I've lost about 10, and my weight has stayed consistent since then.

I have had some moments/days of weakness when I've restricted the calories that I've put in my body.  But in a very short amount of time, the fatigue kicked in, reminding me of why I'm in the process of recovering.  And as time has gone on, those moments have become few and far between.

So all in all, I'm think in a great place.  I don't know if I'll ever have a day without an ED thought, but for now, I'm looking forward to having more days/weeks/months without ED actions :)

Mama Bracelets Poised to Help Ella (by Lindsay & Michael)

We're excited to announce some BIG changes for our company, Mama Bracelets!

What started as a very small company making nursing reminder bracelets, we've evolved into hand-stamped jewelry, which then led us to make support & fundraising products (supporting autism, lung cancer, and of course, SMA).  

We are now pleased to introduce our "ellaWEAR Fashion Jewelry" collections, which include necklaces, bracelets, earrings, rings and pendants!  Many of these products are made from high quality sterling silver.

In addition to the new collections, which will continue to grow and evolve, Mama Bracelets is expanding ways for our customers to purchase our jewelry products.

You can still shop online anytime at www.mamabracelets.com, however we are now implementing our "ellaWEAR Party"…a social gathering to view and/or purchase jewelry, in which the host of the ellaWEAR Party will receive FREE Mama Bracelets jewelry after the event (*see information below).

And to kick off the launch of these exciting changes, ALL of our new ellaWEAR Fashion Jewelry products will be on sale for the rest of September!

The profits that are generated from the sales of our new collection will be put towards the purchase of a new house and the modifications that will have to be made for Ella.  We kindly ask that anyone reading this blog to spread the word about our exciting news!!

Please take a moment to view our Fall 2013 Promo video and visit www.mamabracelets.com to view our entire new collection!

*ellaWEAR Party*

Are you interested in hanging out with friends to show them some  great jewelry products while earning FREE Mama Bracelets  jewelry?? Hosting an ellaWEAR Party is easy and fun! All you have to do is invite your friends, possibly provide some light  refreshments, and Mama Bracelets will do the rest! Based on the sale total of your Party, you will receive a percentage  of FREE Mama Bracelets jewelry (*see chart below)!  The more friends you invite, the more FREE jewelry you can earn!! We are not a multi-level marketing company, so you can be sure  that there is: No pressure to buy jewelry No pressure to become a consultant (as we do not have consultants) No pressure for your friends to host a Social No minimum order to receive FREE jewelry *See chart below Do you have friends that want to come to your party to purchase jewelry, but can't make it to your event?  They can order  online and their order will still be applied to your Party!  If you would like to host an ellaWEAR Party, please send us an email at shop@mamabracelets.com! *Please note that ellaWEAR Parties are currently only offered in the  Chicagoland area.  If you are not in the area, but would still like  to host a Party and receive FREE Mama Bracelets jewelry,  please contact us for information about hosting an online Party at shop@mamabracelets.com!

The House (by Lindsay and Michael)

It's time.

We thought we would have more time, but we don't.  For 2+ years we have struggled with this...now it's time to share our struggle with you and how we have come to a decision to act.

We knew that our current house, as it stands, would not work for Ella's long-term needs.  We have reached the point where we need to start making some permanent changes.  If we make any permanent "handicap accessible" changes, we will have to stay in this house, as we would not be able to afford these types of modifications more than once.

We have talked and met with a bunch of people...building contractors, elevator contractors, realtors, interior designers, and architects to name a few.

These are the things that would need to be done to our current house to make it work for Ella in terms of her independence.

1. Have a permanent ramp put in at the front door.

• We currently use two portable ramps for Ella to get in and out of the house multiple times each day.  However, these ramps are not meant to sit outside, exposed to the elements of the weather.
• We thought about putting the ramp(s) so that Ella could go in through the garage (even though there wouldn't be room with both cars in the garage), but the entrance through our laundry room is too tight for her power chair to maneuver around.
• There is an organization (DSCC) that will fund a permanent ramp for our front door, but they will only do that once.  So if we ever needed to move, we would have to pay for another one ourselves.
• We would also like to have a ramp built that would allow Ella to go from our deck to the backyard.

Portable ramps at the front door

The garage entrance through the laundry room

The stairs leading from our deck to the backyard

2. We need an accessible bathroom for Ella.

• The kids' current bathroom (upstairs) is perfect for children.  However, Ella's wheelchair would never be able to manuver in it;  and as she grows, it would be difficult and dangerous for an adult to bathe her and help her go to the bathroom without proper space and modifications.

The kids' bathroom

3. Ella needs to be able to access her bedroom and the basement in her power wheelchair.

• This is a big one.  The only way to achieve this is with an elevator.  

4. We need another bedroom.

• This is also another big one. We currently have three bedrooms and the girls are sharing one of them.   We are finding that the available space is quickly becoming limited as the kids grow alongside Ella's medical equipment.   Eventually her power wheelchair will be part of the mix and before we know it we will be out of space.
• We've talked about different ways of adding another bedroom, and there aren't many options, as Ella would need to be on the second floor with us (we tend to her needs throughout the night so we need to be close to her room).  The only feasible way we could do it would be to add on to the back of our house and then build up.  This option means you would have to walk through the master bedroom to get to the new room. But we could then modify our current master bathroom to make it accessible for Ella and we would share it with her.  The biggest problem with this solution?  We have been given estimates which are upwards of $200,000.

Ava and Ella's bedroom

Some more of Ella's equipment and supplies (in the closet)

5. We need more space.

• Ella's equipment is taking up more and more space in our house, making it more difficult for her to navigate around in her power wheelchair.

Our living room with Ella's power chair, gait trainer and adaptive chair

Our family room with Ella's power chair and stander (in the back corner)

So after a lot of thought and discussion, we have decided that rather than trying to increase the size of our current house (a very costly endeavor) it would be significantly more cost efficient (by $75,000+) to move into a slightly larger house that would accommodate Ella's needs in terms of space.  We would then add the handicap accessible modifications as needed. 

This is a little hard for us, because we've really grown to love our house.  We've put a lot of work into it since we moved in 7 years ago and we've created so many happy memories here :)

We'd like to stay in Naperville (District 203) because of the outstanding school district and incredible support that they have for Ella, as well as the many friendships we have formed with others in Naperville.  There are many other outstanding school districts in the area, but Naperville will be more affordable for us, without being too far for Michael to commute to Elmhurst.

We think that we will probably end up purchasing a four-bedroom, two-story house (eventually installing an elevator), simply because there aren't many ranch-style houses in the area that would be big enough and open enough for all of Ella's needs.  Plus, even if we found a ranch, we'd end up needing an elevator anyway, so that Ella could go down the basement.  However, we are not ruling out the possibility of finding a ranch that could meet our needs.

So a rough timeline would look something like this:

1. Put our house on the market early next spring (2014).
2. Hope that we are able to sell the house in a timely manner and find a new house that we will be able to modify to fit Ella's needs.  It would be great if we could be in the new house by next summer.
3. Have DSCC install a permanent ramp for Ella to get in and out of the house.
4. Make any "easy" modifications (switch carpet to hard floors if needed, make the backyard accessible, etc.).
5. Within a year or so, have an elevator installed and modify a bathroom.  By that point, Ella will be at least 5 years old, and it will be much more necessary for her power chair to go up and downstairs (as she will be getting harder to carry at that point).

What does all this mean?  It means we have our work cut out for us.  It means we have to find a way to provide our family with a safe, welcoming environment that meets the needs of each of our kids, and us.

It means we must put aside our own feelings for a moment and step outside of our comfort zone.  By doing so we place ourselves in a position of asking for help.  Serious help.  The kind of help that will  bring about a change not only for us, but for those who lend a hand.  

We need your help.

The help that we are asking for comes in many forms.  No one form is more or less important or appreciated than another.  As with any life situation there is a bottom line coupled with a goal;  a place we can set our sights on, plunge forward with all we've got, and go for it.

The bottom line here is $125,000.

This enormous amount of money would bring to Ella a life that she deserves.  A life of independence that many take for granted.  A life filled with purpose that we all need and crave.  A life of knowing that despite her debilitating disease, she too, can be productive, responsible, and part of a family...just as anyone else can.  A life that, in the face of escalated uncertainty about her longevity on this earth, will allow her to experience those unforgettable moments that makes childhood just what it is...a time of innocence, discovery, and unconditional love.

We're not asking for people to reach deep into their pockets without first recognizing that there are several ways we could use your help to achieve what God has lain before us.

Look closely at the following list.  Is there something on it that maybe you could help with?  If so, please find that special place in your heart that yearns to be a philanthropist. Search for that place while keeping in mind the sweet soul known as Ella Casten.

The Casten House Help List:

• Donate financially to our "Caring for The Castens" fundraising page at http://www.payitsquare.com/collect-page/16441.  No amount is too small.  Please share as you see fit.

• Share this blog (http://ellas-corner.blogspot.com) with as many people as you can to see if others can fit themselves into this list somehow.  

• Join us on our new Facebook Page, "Caring for the Castens" and invite friends, relatives and businesses to do the same (www.facebook.com/caringforthe castens) 

•  Join us and invite friends to our new Twitter Page, "Caring for the Castens" at (https://twitter.com/Caring4Castens)

• If you know a contractor, electrician, or plumber with home modification experience, pass the names along to us.

• If you know someone looking for a beautiful house in a quiet neighborhood with outstanding schools...send them our way.

• If you know someone who might be, or is, selling their house that looks like it may be a good fit for our needs...send us their way.

• If you enjoy putting together fundraisers of any kind, please share with us your ideas.

• If you believe in prayer, say one for us.

• If you know of people or businesses that would be interested in our products on Mama Bracelets, please share our information as we are beginning to rely on Mama Bracelets for some extra cash in hand (www.mamabracelets.com).

• If you know of a realtor or lawyer who would be willing to work for a reduced rate or even donate their professional expertise and/or time in the name of helping Ella with her needs, please let us know.

• If you know of an organization, business, or charity that is looking to sponsor something, you can let them know about Ella.

• If you have any connections to the media to help spread the word, a lead in that direction would be great! 

We have been extremely fortunate to be surrounded by so many people who have helped in so many ways thus far.  We would be in a disastrous mess if not for the generosity and compassion of all who have crossed our path. 

It is difficult for us to reach out in such a way; call it pride, self-sufficiency, or whatever you will.  However, this "pride" we carry around with us pales in comparison to what we know we have to do for our Ella.  We willingly, and with honor, humbly swallow that pride and reach out to you for help.

Please consider what you might be able to do for us... 

With love,

The Casten Family

Click here to make a donation 

To learn more about Spinal Muscular Atrophy (SMA), take a moment to watch the following video (created in 2011):



A message from Ella:

Broken Foot (by Lindsay)

A few weeks ago, Ella started complaining that her right foot hurt.  We think she might have bent it in a funny way when she was being lowered to the ground.

We didn't think much of it, after all, we all have little aches and pains now and then.

But after about two weeks of Ella complaining (mostly if she had her AFO braces off), we decided to have it x-rayed.

Sure enough, she has a small hairline fracture in her foot :(

Luckily it's nothing major and Ella won't even need a cast.  Continuing to wear her AFOs will actually help to stabilize her foot, reducing most of her discomfort while she's awake.

The orthopedic doctor that we saw told us that this is definitely not uncommon for a child with SMA.  Because Ella is not weight bearing, she has less bone density, therefore making it easier for her to break her bones.  Ugh. 

Luckily it is a very minor fracture and she doesn't have any restrictions and can continue all of her therapies as long as she's wearing her AFOs :)

Ella enjoying her physical therapy session :)