For the Love of Sophia
Meet 14 month old Sophia. From first look at this big blue eyed baby who always has a smile on her face you would never guess that on the inside she is in the fight of her life. When Sophia was only 8 months old (March 30, 2013) she was diagnosed with West Syndrome (also known as infantile spasm) which is the most catastrophic form of infant onset epilepsy identified as well as the most difficult to treat and control and effects 1 in every 3,000 babies. At the time of diagnosis Sophia was having in excess of 120 seizures a day which were relentless. She spent 6 days in Children’s Hospital Center of Dallas but that was only the beginning of Sophia’s journey. Throughout the past 6 months this special angel baby has been in and out of hospitals as well as regularly seen by a pediatric neurologist, pediatric neurosurgeon, physical therapist, orthotics and her regular pediatrician. Upon her last admit to CMC Dallas on September 10, 2013, while undergoing a 24hr video/audio EEG her team of doctors identified three new hurdles for her to overcome. The first is that Sophia has regressed, due to her still having an average of 15-25 seizures on a daily basis, and lost her ability to speak the 20+ word vocabulary she had only weeks prior to her admit. Second, it was identified that Sophia will need correction for her little feet as they are turned outward which could be one of the reasons that she is unable to walk. She was recently measured to be fitted with SMO’s (these are little braces that help gradually turn the feet into the proper position) in hopes that it can be corrected this was as opposed to surgically. The last thing of concern is that Sophia’s little spine is “dimpled” in and curves to the left at the base of her spine instead of straight as it should be. The pediatric neurosurgeon is concerned this could be a “tethered spinal cord” which unfortunately can only be corrected through spinal surgery. Due to these new concerns Sophia is scheduled back to CMC Dallas on October 11, 2013, to undergo a sedated MRI of her brain as well as her lumbar. After these tests she will also begin going to Scottish Rite hospital in addition to CMC Dallas.
Throughout all the battles this little angel baby fights one thing is left unchanged and that is her beautiful spirit, captivating soul and her ability to smile through it all. She steals every heart she comes in contact with and is a true inspiration to all as well as a true living miracle who in her short time on this Earth has taught many far more than she could ever be taught!
You can follow Sophia’s journey on her page, For the Love of Sophia (www.facebook.com/fortheloveofsophia). Also anyone who would like to contact Sophia directly with cards, letters, gifts or donations can do so at:
For the Love of Sophia (Sophia Proffer Donation Fund)
P.O Box 1415
Paris, Texas 75460
Content submitted by Angela Andrew