August is SMA Awareness Month

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 ELLAwareness & Mama Bracelets 
welcomes you! 




The ELLAwareness For SMA Video








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An incredible opportunity for Ella awaits her this summer via Young Naperville Singers (YNS). They are performing in Colorado (5-day trip) and she needs a bit of financial help (for chaperone/caregiver costs, special accomodations, etc) to realize her hope and goal of joining her beloved choir this coming summer! Please share our GoFundMe page as you see fit... Thanks, The Castens
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The Power of People

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The brightness of her eyes met my gaze as I entered Ella's room at Lurie’s Children’s Hospital in Chicago. The room looked brighter from when I left 45 minutes earlier. Ella’s eyes then glided away from mine and steadfastly smiled at Sylvia (name has been changed), a hospital volunteer, who had been with Ella while I was gone. -------------------------- Leading up to Ella’s spinal fusion surgery, the anticipation held a plethora of emotions; from excitement for a straighter spine--to the dreaded fear of the pain that goes along with this kind of surgery. Her spirits, however, remained optimistic. On a Thursday, Ella entered Lurie’s Children’s hospital in Chicago…ready for her life to be changed. When the surgery team was finished, Ella was placed in the PICU (Pediatric Intensive Care Unit) primarily to monitor her respiration and pain for several days. Her pain was constant and it was difficult on her; and on anyone who was with her. She was on Dilaudid, Oxycodone, Valium, and Tyle...
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A Knight for Ella...(by Michael)

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The moments before bed are the best times to whisper into the ears of our children; to tell them how they delight our lives, the ways in which we love them, and to place a soft kiss upon their tender skin. The other night I had Ella in my arms, rocking her before placing her in her crib.  The lights were off, the usual glow of the moon gently making its way into the room, the flicker of the "flameless-candle" that reads, "Be still and know that I am God..." danced on the ceiling. As Ella's eyes softened and began to pave the way for slumber I whispered into her ear the words, "There are so many people that love you.  We will all help to take care of you."  I stroked her under her chin and she nuzzled her head against my chest, seemingly understanding the words that found her ear.  After our prayer I placed her gently into her crib, kissed her goodnight, and allowed slumber to wrap its arms around our little girl. The next evening Lindsay and I walke...
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