Ella’s Story

 

Our Story of Ella   

   

     In 2004 our family was blessed with the most adorable baby girl which we named Ella Grace.  She was born with no health concerns and was beautiful and perfect in every way.   

 Within a couple of months of her birth, something changed as I (mom) became concerned about her excessive sleeping, floppiness and lack of energy. I questioned these issues with the pediatrician, but was told that there were no concerns at that point. My motherly intuition told me something different!  
 

When Ella reached the 12 months old she could not sit up on her own and made no attempts to speak.  She did not begin to walk until just shy of age 2.  I knew that Ella was not reaching the development milestones as she should, but was told that there is a wide spectrum in development and that she would catch up in her own time.   

Ella developed a host of more devastating symptoms that were upsetting her and were horrific for us to watch.   

Ella and Deb

Ella and Deb

She began to bang her head on her crib rail and tile floor after waking in the morning and after nap.  Ella would routinely stick her fingers in her ears, but there was never an ear infection.   

Finally…. The recommendation was made for her to be seen by a developmental pediatrician and there was an aggressive approach to find some answers.  A couple of months into the process, an MRI was performed. That is when we were given the diagnosis of Chiari Malformation type I. We were told that the cerebellum, the master of balance was compromised by its displacement in the brain, therefore descending through the base of the skull into the spinal canal restricting spinal fluid from passing through and putting tremendous pressure in the brain and on the spine. We could now understand the head banging and the ringing in her ears.   

What a relief to have an answer, a diagnosis, and the hope of a procedure that would possibly alleviate some or all of her symptoms.  We were finally hopeful that Ella could begin a life with a brighter future.   

Ella underwent a serious decompression surgery which consisted of the removal of a small piece of the skull bone at the base of her skull, a small portion of the top vertebra along with shrinkage of her cerebellar tonsils.   

Her operation was successful and it has relieved much of her ailing symptoms.  Ella continues to face some challenges with delays in speech, fine and gross motor skills, however she is successfully accomplishing all tasks presented to her with such great determination and she is thriving today.  Ella has an abundance of compassion and love for those around her and sets a good example of hope for others!   

–         It has become our life’s mission to bring awareness to the forefront of society and  offer a wealth of resources with the goal of obtaining early diagnosis and medical intervention.   

We wish you the very best in your quest for answers and hope you and yours have a joyous and healthy life!   

Kindest Regards,   

The La Due Family 84