A Run From Pennsylvania...(by Michael)

     Walking the path of SMA with Ella has shown us much.  One aspect that we speak of often is the unending support we receive from so many.  When speaking or writing of "the many" we will often say, "family, friends, acquaintances, and strangers".  I'd like to speak of one particular "stranger"; whom, by the way, is no longer a stranger.

     Her name is Katherine and she lives in Pennsylvania.  We had never met Katherine.  We never knew her at all.  She, likewise, never knew us.

     Katherine is a runner.  She runs all kinds of races.  She trains, from what I can tell, constantly.  She braves all sorts of weather and terrain.  To run as she does requires commitment, determination, stamina, and a passion for it. 

     We met Katherine through Facebook.  You see, there is a group of people, a rather large group, of people who are runners.  The unique part of their running is that they "run for others"...they run for those who cannot.  We heard of this group through a friend and decided to check it out.  We "signed up" Ella to have a runner.

     Katherine is Ella's runner.

     Katherine runs for Ella.  She posts pictures, stats, notes, encouragement, and anecdotes for us to read to Ella.  She will often send Ella her medals, running numbers, and other articles from the race day!  

     Ella loves Katherine.  Whenever I tell her, "Ella, your runner, Katherine, has left a note on the phone." her eyes light up and her little body shakes in excitement.  I read the entry and show the pictures.  I ask Ella what she wants me to write to Katherine.  Invariably she responds, "I love you, Katherine!"...and so I write it, along with some of Ella's tidbits.

     Katherine is no longer a stranger.  She is now part of ELLAwareness for SMA.  In fact, she now posts SMA facts and shares Ella's story through many of her entries, thus spreading the word to whomever reads her posts.

     Katherine may be many miles from us; she may have once been a "stranger" to our world; yet now, in such a short time, she has run her way into our lives...and we are thrilled to have her "running for Ella"...

     Thank you Katherine... 

A Glimpse of What I See...(by Michael)

Showering our children with love.  Filling our house with grace.  Bringing smiles to our lives.

Ava, Henry, and Ella have a mother who has dedicated herself wholly to them.  I have a wife who loves me.  The world has a person who brings it "cookies and flowers" in that she spreads joy wherever she finds herself.

Lindsay Casten.  Born on December 24th, celebrates her birthday amidst the holiday season.  A season which she holds dear to her heart.  A season that is highly favored in her eyes.  She finds a joy during the Christmas season that I have yet to find in another.  

The joy that surrounds her is more than the Christmas carols, candles, and cards.  It's more than the fire, the hearth, and the decorations.  It is a simple yet complex feeling that shines forth from her.  If you catch her in just the right light, at just the right time, you can see the beauty of the season in her face.  Her eyes sparkle just enough to catch yours--and her smile captivates.  

When we were dating, engaged, and first married we often talked about raising a family.  The warmth and security felt during those discussions brought us to bring our first child, Ava, into the world.  We lovingly brought Henry and Ella soon after.  We were a family of five.  

The diagnosis of SMA (Type 2) brought with it more than we could have ever imagined.  It added a dimension to child-rearing that eludes most families.  I can tell you what it means to be the father of a child with SMA...to be a mother, though...I can only relay some of what I see in Lindsay.

Although Lindsay watches what SMA does to Ella every moment of her life, she perseveres in taking care of her.  She treats her just as she does Ava and Henry.  Her sense of fair play and parental judgement is not clouded by the disease.  She finds ways for Ella to participate in every part of our family life.  She finds toys and games, furniture and equipment, that will be suitable for Ella.  She has organized Ella's daily life in such a way that Ella thrives within it.  She disciplines her with a firm yet loving hand, as she does with Ava and Henry.  She dresses her in clothes that bring out the natural beauty of Ella despite the bulky braces she must wear.  Within a day of caring for all three children she manages to keep the house beautifully clean and the dinners deliciously cooked.  She shops for food, clothes and whatever else we need, all the while as she works through the challenges of SMA.  At the end of the day she reads to our kids before bedtime, is able to give me some time, and then curl up with her book to be taken away in the story of her choice.  

And this is just a glimpse from me to you.

Today is Lindsay's birthday.  I can only hope that as she traverses through the day and through the holiday season she can see that how incredible she really is to us; how wonderful she is to have around, and how grateful we all are for her.

With Love,

Michael, Ava, Henry & Ella (Sasa & Doublestuff, too!) 

That's Right, Who Wouldn't? (by Michael)

My intention was to go to Wendy's with Ava, Henry, & Ella.

I pulled onto the entrance street of the restaurant only to see a boarded up building.  A sign flapped in the wind and read, "Closed for Renovations".  The three kids and I were disappointed; but more so we were hungry.

Without thinking I said, "We can find another Wendy's or McDonald's or something."  Once the word "McDonald's"  left my breath all three kids screamed, "YAY" and Henry said, "I just saw one over there and it has a playground!!"

The McDonald's playground.  Every kid loves the McDonald's playground.  Who wouldn't?  You get to take off your shoes and climb, jump, slide, and be silly knowing that a McDonald's meal was either just enjoyed or is coming soon.

Who wouldn't?  

This is SMA.  A child who has every mental capability fully intact.  A child who has every desire as any other child.  A child with the urge to play, to move, to command her world...but cannot.  Not for lack of will.  Not for lack of desire.  Not for lack of creativity.  But for lack of motor neurons.

Despite not having the climbing, sliding, and jumping available to her, Ella wanted to sit on the McDonald's playground.  She wanted to be a part of it in some way.  Many children stopped and stared at us.  They glanced at her wheelchair then back at her and back again.  They were undoubtedly trying to figure it out...for to them I'm sure she certainly looked like she could easily get up and walk. Each time they stopped I said, "Hello" and Ella followed suit. 

She wanted me to stay with her, "In case someone knocks into me and I fall." she told me.  So I did.  Other parents watched us interact and when our adult eyes met there came a smile of encouragement from those I saw; for they knew that whatever my child was suffering from, it was something serious.  

I sat and played with her while Ava and Henry played all over the playground.  She enjoyed herself as we sat there.  She danced her little "sitting wiggle" dance, she giggled and laughed, she leaned on me and hugged me, she scooted so her legs dangled over the side, and of course, she wanted her shoes off--just like everyone else.  

I didn't want to go to a McDonald's that had a playground.  Or if it did have a playground I didn't want to allow my kids to play there...I thought it would be too hard for Ella; or maybe I thought it would be too hard for me.  I knew this was unfair, to all of us, so I set aside my feelings and allowed my kids to be kids...to be who they are; SMA or no SMA.

I guess it's about meeting SMA where it's at and then taking hold of it, owning it, and working with what you have.  How funny that a three-and-half year old just simply knows this.

Our First ellaWEAR Public Event (12/7/13)!!

We're so excited 

to be a part of this holiday event. 

We will have a booth set up with all of our ellaWEAR Jewelry 

alongside 20+ other local small businesses.  

If you're in the Chicagoland Area 

stop by and find some 

creative, original, and unique gifts!  

Of course, all sales of 

ellaWEAR Jewelry 

will benefit Ella Casten's housing needs.

"Don't Do My Nose"...(by Michael)

Just recently Ella was complaining of her nose hurting while taking her bath.  At the same time she was also having rough nights, one after another.  Her bipap machine was also going off throughout the night...much more than usual.

We put two-and-two together and figured out that her overnight mask was too tight.  For a few nights we experimented with different "tightnesses" until we found a happy medium.  So far things have been back to the normal nightly routines.  With one exception...

During the time before we figured out what was bothering Ella she would always say to me, as I was bathing her, to "not wash my nose when you wash my face".  Of course, I obliged.   Once we figured out the bipap mask issue I figured this request would stop, yet she continued to say the same thing night after night.

As time rolled along I gradually began "skimming" over her nose to make sure it was, in fact, getting clean...at least somewhat.  She never whinced but always prefaced the face washing with, "Daddy, don't wash my nose when you wash my face."

This has gone on for a good month or so.  I think now it is simply a matter of habit.  She tells me not to wash her nose, I say, "oh, ok...no problem."  She closes her eyes tight and scrunches up her mouth as to not let any soap enter either place and I proceed...I wash the sides of her face, wrap around the ears, clean her jawline and chin, and whip, ever so gently, over her cheeks and the sides of her nose while saying at the precise moment, "Ok...now we got it."  She waits patiently for the stream of shower water to wash over her face as I count to three and the ritual has ended.  Her nose is clean and she's none the wiser.

As I worked through this process one evening a realization washed over me.  I realized that I will be bathing my child, most likely, for the rest of her life.  This is not something that most parents can say.  At some point, quite naturally, the bathing becomes a personal responsibility.  The child grows and becomes independent.  

I thought about this briefly as I was washing Ella.  And I was awestruck at how much she trusts me as I moved her from one position to another, making sure not to miss any part of her in the cleansing of her body.  She "rolled" with me; she allowed me to adjust her accordingly; she put her trust solely in my knowledge of her physical limitations.  Through contractures, weakened joints, and "floppiness" we work together to make sure she is cleansed with dignity.

I've been bathing Ella since her birth.  I've watched, with a sad yet watchful eye, how SMA really does affect the human body.  I have also watched, with amazement and pride, how well my three-year old accepts and works with what she has.

"Don't do my nose" she says...     

The Same Breath of Thought...(by Michael)

I woke one morning this past week to read on my Facebook page that a young boy, a very young boy, died early that morning.  SMA took his life.  The post was a mixture of an author dazed and confused, angry and despondent.  

The young boy was the fifth child lost to SMA (that I know of) in as many days.  Five days.  Five children.  

The posts, when they appear, quickly fill with comments from all walks of life.  The thread grows longer every minute as more and more people chime in.  Many of whom have lost a child to SMA or some other disease.  Expressions of sorrow and support echo through the writings.  Sympathy and empathy abound.  

The SMA Community is a tightly knit community bound together unwillingly by the strings of a disease most had never heard of.  Yet bound together we are.  As I have written so many times before, we celebrate our children's triumphs together, extend a helping hand when possible to one another, and mourn at the loss of every person.  It's a community that hopes together while at the same time walks in disbelief of the "how's" and "why's" of life itself.

There is one aspect I have taken particular notice of as I clumsily walk this path of SMA.  I notice that every parent recognizes the amazing strength people with SMA possess.  The disease itself, by its very nature, is debilitating and as we know, deadly.  Yet children of all ages battle against it with pride, dignity, self-confidence, and grace.  Adults that survive their childhood exemplify what it means to be a survivor against the odds.  I feel that the spirit that resides in those afflicted with SMA is the spirit that drives the hope for a cure.  That spirit is strong.  That spirit is alive.  That spirit cannot be quelled.  

As we take the moments during our days and nights to think of those who have lost their earthly life to SMA, to think of those left behind in the wake of their death, we can also, in the same breath of thought, allow the undying spirit of our SMA warriors, each and every one of them of all ages, enter into our consciousness and fuel our hopes for the future of those whom still fight every single day.

Sometimes I'm Puzzled...(by Michael)

Sitting across from Ella while on the hardwood floor, her back resting against the wall behind her, I see my three-year old concentrating on a game.  Her focus is sharp, her intentions are calculated, her body unnaturally fighting her desire to manipulate not only herself, but the world around her.  

She sits in front of me, void of any braces, as she relies on her own devices to keep herself balanced. A considerable amount of energy on her part is used simply maintaining her sitting position as she plays the game in front of her.

The game is a wooden board covered in a strong but thin plastic.  Pathways are carved into the board, intertwining and intersecting, and at the ends of the pathways are circles (almost like cul-de-sacs) which are of various colors.  There are tiny magnetized balls that are colored the same as the pathways' end circles, and a magic magnetic wand is roped to the board.  The object: using the magic magnetic wand one must move the little colored magnetic balls to their rightful colored circle-spot.  Patience and dexterity are required.

The board, at first, rested on her lap.  This presented a problem, though.  Every time she shifted her weight the little balls would roll out of the places she wanted them to stay. 

We spread out her feet and placed the board on the floor, in between her legs.  Now it was stable.  But now she had to grapple with gravity as she needed to reach across the board to move the tiny balls around.  

I watched.  I coached.  I helped just a little.  She did wonderfully.  Challenging her own comfort level, reaching farther and crossing mid-line.  Leaning on her one arm in an appropriate position and then switching; transferring the magic magnetic wand from one hand to the other.  

A simple game--yet riddled with a host of challenges for Ella. 

Real Challenges.  
                          Difficult Challenges. 
                                                           SMA Challenges.

I'm sometimes puzzled by this disease...

I'm sometimes puzzled by how one can lose their muscle functioning yet still take on the challenges that are part of everyday life.  

I'm sometimes puzzled by the sheer determination exhibited by a three-year old when often, I feel defeated.

I'm sometimes puzzled by how Mother Nature orchestrates our lives--providing us with everything we need despite our lack of seeing it right in front of us.

I'm sometimes puzzled by the strength found within a frame of a person so delicate and fragile, so young.

I'm sometimes puzzled by the courage I find by simply watching my daughter overcome a disease--each and every day and every night...

When she finished her magnet game she asked for a puzzle. With gratitude for her persistence and an eagerness on my part to engage her intellectually once more, we puzzled through the puzzle, despite SMA.  All the while, as I was with her, I myself was puzzled...simply puzzled.

She's quite a person...

Our Little Henry (by Lindsay)

Our kids are small.  They're petite. They always have been.

But Henry's size has caused a little concern with us and his pediatrician.  

Henry has a disorder called Renal Tubular Acidosis (RTA).  He was diagnosed by a blood test shortly after he turned one year old. 

Basically, having RTA means that Henry's kidneys are not working properly and he has too much acid in his blood.  Having this disorder can also cause stunted growth (which is why he was tested in the first place).

However, there is an easy fix.  He's been taking a medication twice a day since he was one year old and has had normal blood tests ever since.  RTA is typically outgrown by the age of 5 or 6, so this spring we will be taking Henry off of the medication to see how his kidney function reacts.

But Henry is still quite small.  He is at the 5th percentile for both height and weight and at his 5 year checkup last week, his pediatrician suggested that we take him to a pediatric endocrinologist to see if there is something else going on or if there is something more we could be doing.

So this past Monday, I brought Henry to see Dr. Levin.  To be honest, I really had no idea what to expect at this appointment.  

Dr. Levin had an incredible bedside manner and was very knowledgable regarding growth issues.

She took an accurate height and weight for Henry and ordered blood tests and an x-ray of his hand (to determine his "bone age").  We will take Henry back to see Dr. Levin in 5 months to do another height and weight to see what his "growth velocity" is (his rate of growth).

Looking at Henry's medical information as well as Michael and my heights, it is projected that Henry should be around 5'9" as an adult.  However, at his current rate, he will not even come close to that mark.  

So what will we do?

We're not quite sure at this point.  But Dr. Levin was discussing the possibility of administering growth hormones to Henry.  

But administering growth hormones is a little controversial these days.  There are possible side effects from the daily injections.  And some professionals have mixed feelings about artificially giving the growth hormone to children.  And the growth hormone injections are very costly.  

So for now, we wait and see.  We'll take a look at Henry's lab and x-ray results and then wait for his appointment in 5 months to see his growth velocity.  

Hopefully there will be a clear choice for what actions, if any, we should take.

Being so brave for his blood test :)

"Spoiled by Oil"

It's our pleasure and honor to announce that a local businesswoman has stepped forward and offered to help us raise money for the "Ella House Fund"!

Zana Maxwell, IPC for doTERRA Essential Oils, has dedicated the entire month of November to Ella!  Any sales generated by us (and you!) will result in a generous donation to Ella through Zana!

Please take a moment to view her website.  Learn about the wonders of essential oils.  

Get some great ideas and products for your holidays!

(new online holiday catalog coming out soon!)

Website:  Direct Link:  Spoiled by Oil

Copy and Paste:  www.mydoterra.com/spoiledbyoil

Please share as you see fit

Zana Maxwell's contact info:  zanzan2619@gmail.com

Zana Maxwell's IPC #:  540785

Intertwined Miracles...(by Michael)

The sight of Ella standing by herself has long eluded us. 

She was briefly able to stand while holding onto something as a baby...a milestone that never passed the assisted stage and in fact, never developed into the next milestone.

Shortly after she stood while holding on to something she was diagnosed with Spinal Muscular Atrophy.  Our sights were directed into another direction, one we never imagined.

That direction included, but wasn't limited to, therapies, equipment, heartaches, sleepless nights one after another, scary hospital visits, a knowledge of the complexities of the human body, fundraisers, and miracles.

The picture below is one such miracle.
 

According to Wikipedia, the first part of the definition for "miracle" reads:

"A miracle is an event not ascribable to human power or the laws of nature and consequently attributed to a supernatural, especially divine, agency".  

My heart skipped a beat when I saw this in person.  On the one hand it was so natural to see a three-year old standing on her own, on the other hand it was so foreign to see that the three-year old was Ella. I wasn't even sure how to react as my mind was grappling with the scene before me.  Standing. By herself. Strong and confident.  Actually able to move her head which shifts her weight.  And smiling with a pride unmatched by any other I've witnessed in her.

Ella's lifetime has been filled with miracles and occurrences that has re-directed our sights of the future.

First, the continued support that people, including family, friends, acquaintances, and strangers show for Ella.  Since the time she began showing signs that something was wrong to this very day, people have truly been there for her and our family.  A miracle in and of itself. 

Second, there's incredible research being conducted to provide possible treatments and/or a cure for SMA. The research to date has the SMA Community and their families and friends more hopeful than ever before.  The research and those who work tirelessly on them are truly amazing. 

Third, Ella herself seems to be getting stronger in many ways.  She works hard and fights this disease with all that she has in her.  She time and again provides us with "WOW" moments.  She ceases to amaze those around her.  With this kind of progress it is undeniable that her independence is going to mean so much to her; for that is what she strives for the most in her world...independence.

When I look at these three seemingly separate "miracles" I cannot help but seek a way to bring them together.  As I do so I realize that they really are part of each other.  They are intertwined in a way that brings a rush of hope for me and Lindsay.

Our goal the past few months has been to raise enough funds to be able to provide Ella with a house that will accommodate her needs, primarily her need for independence.  It would be less expensive (by about $75,000) to simply purchase a house with 4 bedrooms and complete the necessary modifications than to modify our current home.

Now that research is getting closer to finding possible treatments and/or a cure the likelihood that Ella may survive longer than her initial prognosis is a real possibility.  Her survival, however, would most likely include the need for a modified house for the rest of her life.  A tall order to say the least.

Now that Ella is showing strength in ways we couldn't have imagined, her need for independence increases...if only on a emotional level.  We must never forget that we are to take care of her physically as well as emotionally (and spiritually).  I couldn't imagine her being able to do something but in essence, being denied the opportunity.  

Now that our support system (namely our family, friends, the acquaintances, and strangers) have grown to know and love Ella we are in a position to once again reach out and humbly ask for assistance.  Unlike before, however, this comes with more behind it.  For we find ourselves in a better position than just recently on two fronts.

Our "Caring for The Castens" concept that is dedicated to "Ella's House Fund" has miraculously brought in over $17,000 that can be used to provide the accessibility needs required.  This is a miracle.

Our newly formed "ellaWEAR Jewelry" which is also dedicated to "Ella's House Fund" is specifically designed to be a win-win situation for all involved.  A host reaps the reward of knowing that they are helping to raise funds for Ella far beyond what they could offer alone.  One party raised close to $700 in 2 hours!!  Not to mention that the host also receives a generous amount of free jewelry.  In addition, the guests of the host enjoy great deals, a wonderful experience, and a part in helping Ella.  It is an easy way to offer assistance, can be accomplished in person or online, and there are absolutely no strings attached.  It is simply a way for us, along with you, to raise funds for Ella.

  

We have talked about how it will be bitter-sweet to have to move.  We have an abundance of memories tied closely to this house.  Memories that have shaped our marriage, our family, and our personal journeys.  Memories that carry joy and sorrow, coupled with newly discovered avenues of life.  It has been more than a house, it has been a home.  Adorned with love, filled with the breath of sincerity, and will forever be the place where Ava, Henry, and Ella began their lives.

We are hopeful that the sharing of our story continues; we welcome anyone who might step forward and host an ellaWEAR Party in the name of "Caring for The Castens", we are forever grateful for the time, the prayers, and the love that has been showered over us.

__________________________

If you are interested in hosting an ellaWEAR Party either in person or online, 

feel free to contact us at:

shop@mamabracelets.com

Healing Continues with Time (by Lindsay)

Life after Ella's diagnosis was rough.  Rough in many ways.

We were new to this disease called Spinal Muscular Atrophy.  Our future, Ella's future, was unclear.  

We knew she would probably never walk and we feared for if/when the disease would take her life.  

She was officially diagnosed late summer of 2011 and after the reality started to sink in, I went to a dark place.  The darkest place I've ever been in my life.

Fast forward a few months to the holiday season.

The time from Thanksgiving until New Year's has ALWAYS been my absolute favorite time of year for as long as I can remember.  It's always so magical for me and it fills me with such joy (to the point where I kind of freaked out Michael during our first Christmas season together ;)).

But the holiday season of 2011 was different.  It was dark.  And empty.

I wanted to skip the holidays all together.  

I didn't want to spend time with any friends.  I didn't even want to see family.

After all, what was the point in celebrating anything when I was in such a dark place??

So the holidays came.  We still put up Christmas decorations and went through all the motions, mainly just for Ava, Henry and Ella.  But other than how it looked from the outside, the inside was empty.

Fast forward one year.  The holiday season of 2012.

Our life was completely different.  Ella was now dependent on seven machines to keep her healthy.  We had added a 300 pound power wheelchair (among other large pieces of equipment) to our house.

But those were not the only differences.  

I was different.  A lot different.  

After hitting my lowest point, I was able to start moving on with life.  I don't know if I will ever truly accept SMA, but it was becoming more "normal" for us.  I was getting used to it and everything that went with it.

And I was ready for the holiday season.  I mean really ready.

I almost felt like I had to make up for the previous year.  And it felt great!

Fast forward almost one more year.  

The fall of 2013.

People don't lie when they say that things heal with time.  This year, my excitement and seasonal joy has started in October.  I've been so excited that the weather has cooled off enough to start wearing sweaters and boots :)  

We have added a few more Halloween decorations to our small collection. 

We have fires in our fireplace almost every night.

I got this AMAZING Yankee Candle that is called "Apple and Pumpkin Picking" which simply fills me with the most incredible warmth (I've already gone through almost two entire candles since the beginning of October).

And get this...I set up a little photo shoot in our dining room one morning last week, took some pictures of the kids and created/ordered our Christmas cards already! (I know, that might be a little TOO soon...don't worry I won't send them out until December :))

But I feel...happy.

I'm in such a different place than I was two years ago.  We all are.  Time has really started to heal our hearts.

Yes, there isn't a day that goes by that we don't wish that our sweet baby didn't have this debilitating disease.

But we're handling it now.  We're in a routine that works.  And we're able to remain positive most of the time.

So bring on fall and the holiday seasons...  

I'm SO ready :)  

A Different Feeling Altogether...(by Michael)

The rain started in the late morning, just a slight drizzle, not enough to stop the mornings events.  It continued through the afternoon, off and on, building up more strength with each short rainfall.

Our plan was to visit "Skinny Sweet" in the mid afternoon for the fundraiser they were hosting for Ella.  We came home from Henry's soccer game around lunch time, ate our lunch and began to get ready to go.

Ella must leave our house through the front door these days since that's where her temporary ramps are.  Ava and Henry usually run out before her and play for a short bit in the front yard as they wait for the rest of the family.  I called Ella to the front door.  The whizzing sound of her wheelchair told me she was on her way.  She rounded the staircase and stopped, as I was between her and the door.  I wanted to tell her why we were going to Skinny Sweet.

"Ella" I began, "today we're going to Skinny Sweet just for you.  The people who own the store are helping us to raise money so we can get a house that will help you be the best person you can be.  A lot of people are coming to help as well."

She looked at me with her big brown eyes, taking in what I was telling her.  She didn't say anything but I could tell something was brewing in her mind.  Her head tilted a bit to the right, and she leaned forward some.  The only word that came from her mouth was, "kiss."

I gave my youngest a kiss.

"What do we say when people help us?" I asked her.

"Thank you" she replied without missing a beat.

"You're a good girl, sweetie.  Let's go." was all I said.

The ride to Skinny Sweet was accompanied by a torrential rainfall.  It lasted until we pulled into the parking lot.  

There were friends at the shop.  The kids were excited and Lindsay and I were touched.  Knowing that people take time out of their lives to help us with ours brings about feelings of comfort, safety, and encouragement.  The storm that is SMA is better weathered with good people around us.

As we left Skinny Sweet the rain once again came down.  It seemed to know when to fall; in such a way that allowed us to get to and from the car without getting Ella's wheelchair wet.  It's funny how that happens sometimes.

Throughout the day and evening we received emails, texts, Facebook messages, and pictures from people who also visited Skinny Sweet to help us out.  Seeing children and adults smiling, reading about how delicious the treats were and how happy people were to be a part of the fundraiser filled our evening and our hearts.

People have been asking how we are coming along with our plans for "Ella's House Fund".  To date:

• We have been in contact with a few realtors; we have accepted a generous offer from a fellow church member who is a realtor.
• We have been keeping an eye on the housing market, both houses for sale and those that have closed in our area.
• We have received information about house modifications that we will need to implement once we buy a house that will work for us.
• We have raised just over $3,000 (not including the Skinny Sweet Fundraiser) towards our "Ella's House Fund".

We have a long way to go yet we are thrilled with how things have been progressing thus far.  Skinny Sweet is only the beginning, and what a wonderful beginning it was!

Lindsay has worked tirelessly on putting together a whole new jewelry collection that will directly benefit the "Ella House Fund".  

It's a beautiful collection of bracelets, necklaces, pendants, earrings, and rings that exemplify the Mama Bracelets' tagline, "simply stylish. simply jewelry".  

We named the collection, "ellaWEAR Jewelry".    We have secured our own domain name to make it easy for people to find the products and purchase them (see link at the end of this blog post). We've designed personal and online parties that people can host with us to sell the jewelry on a larger scale, thereby raising even more funds for Ella's needs.

This is the first time since Ella has been diagnosed that we have taken a proactive approach to raising money for Ella.  We've raised money for FSMA (and still continue to do so) and have been the recipients of several incredible fundraisers put together by others; and now we are putting our best foot forward and actively seeking ways to help ourselves.  It's a different feeling altogether.

I'll leave you with some links for the "ellaWEAR Jewelry" collection and fundraising opportunities therein.  I've included a few pictures as well, to give you an idea of the beauty of the "ellaWEAR Jewelry" collection. 

Also, there are some fun pictures of the Skinny Sweet Fundraiser.

As I told Ella before we left for the fundraiser, we wanted to make sure to say, "Thank you"...

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Some ellaWEAR Jewelry links

ellaWEAR Jewelry:  www.ellawearjewelry.com

FAQ's:  Hosting a personal ellaWEAR Party

More:  Hosting an Online ellaWEAR party

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545 Roosevelt Rd
Glen Ellyn, IL

Getting ready to GO!