We never knew love until Ella joined our world. Since the day we knew we were having her, Ella has stolen our heart.  Weighing 5 pounds 6 ounces at birth, her beauty captured every ounce of our adoration.  We thought we could never love her more than we did the day we laid eyes on her. This has proven to be untrue. Everyday our hearts burst with more and more admiration of her beauty, her unshakeable love for all, and her relentless determination to be stronger everyday. 

Ella young girl with glasses and a santa hat diagnosed with Koolen-de Vries Syndrome

In the early days of illness, we grieved the reality that her life would be full of struggles. We would never have fathomed the depth of those struggles when we brought her home from the hospital weighing only a little over 4 pounds. Out of fear of overwhelming parents new to the diagnosis, we will not go into detail of the very large list of medical issues Ella struggles with daily.  Many of Ella’s struggles are unique to her and not consistent with most in the Kool family.  Some of her medical struggles include: bilateral hearing loss, CP (due to a brain bleed at birth), neurogenic bladder, urinary reflux, intestinal pseudo obstruction, Arnold Chiari Malformation, and suspect mitochondrial disorder. Her health is often unstable and she requires nursing with her at all times.

We never knew love until Ella joined our world.

Although her EEG has been abnormal, fortunately Ella has not had an identified seizure. Interestingly enough, of the very large list of medical struggles Ella faces, one of the hardest for us to accept early on was her need to wear glasses at only 8 months old.  It was an outward reminder that something was wrong. We could hide the tubes, but not the glasses. We are grateful for the glasses now. The glasses were a huge help for helping Ella developmentally. She could finally see toys to try to grab for them. Her vision was very poor.  She wears bilateral hearing aids and those have been a huge help for her.  She continues to have a GJ tube and require continuous tube feedings as well as a cecostomy. 

We are thankful Ella’s Kool friends do not share those health struggles unique to her and pray daily those struggles will improve for sweet Ella. If anyone would like to hear additional details or talk about a certain health diagnosis of if you need encouraged, please feel free to contact Koolen-de Vries Syndrome Foundation and we can share contact information.

Ella was one of the first children in Ohio to be diagnosed with Koolen- de Vries Syndrome.  Ella is currently in the 6th grade. She is mainstreamed most of the day.  She makes straight A’s and B’s.  She is super smart when her body is working and she is healthy. When she is weak she is often confused and her body is tired and doesn’t work right. Ella started talking in full sentences within weeks of getting her AAC device. She can program her own device and can navigate technology quicker than we can most days. When her energy runs low (most days) she requires her wheelchair and her AAC device to function. Besides communicating orally, she uses her AAC device for writing long sentences and easily navigates from pdfs to word documents and navigates her Tobi software at its full potential.  It is nothing short of amazing! She is always surprising us with hacking our phones, Facebook accounts, and teaching us new “teenager words”.

Young blond haired girl wih glasses and Koolen-de Vries Syndrome holding doll

She loves singing in choir and has even earned several opportunities for solos. Tears stream down the faces of the teachers, classmates, and parents as they are reminisce about the little girl that couldn’t speak but with a few hard to understand words is now belting out the lyrics to her favorite song. She loves fashion and is always excited about a new pair of shoes or skinny jeans! She lives with her mom, dad, brother (Ayden), and her favorite dog Max.  She has a mutual crush on a boy in her class. (We let Ella read this. While blushing, she corrected us. Apparently, she has two boys that like her and she just isn’t sure what she is going to do! Oh dear!)  She dreams of getting married and having children of her own someday. We don’t crush those dreams.  Perhaps it will look different than our dreams for her, but it is her life story. With God, she will write that story.

Ella’s determination to walk, talk, and stay healthy is beyond inspiring.  She is a friend to all who know her.  She seeks out those that need encouragement and offers it so graciously. She sees the best in others.  It is true…she still captures our hearts, our dreams, and our laughs. We are better people because everyday we have her in our lives.