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Donna and Charlie Jenkins' Story

CNS Foundation's eCard Awareness Campaign Winners Receive Freedom Concepts Pommel Walker

By Donna Jenkins

July 19, 2005

Charlie, age 7, is the love of my life and has spastic Cerebral Palsy.

I was so excited to learn that I had won the Freedom Concepts Pommel Walker offered in CNS Foundation’s eCard awareness campaign for my son, Charlie. Charlie, age 7, is the love of my life and has spastic Cerebral Palsy. 

I was so happy and I felt as if I had won the lottery
It was 1998 when I learned, to my surprise, that at the ripe old age of 38 years old I was pregnant.  I could barley believe it.  When I called my mother she said, "YOU ARE TOO OLD!”  After her reaction, I was afraid to tell my husband who had a history of heart troubles, worried that he’d have another attack. When I did break the news I did it gently, showing him the results of home early pregnancy test.  He took it into his hands and then looked at me and saw the joy in my eyes and began to feel the same way. 

How fast things can change
My first ultrasound was normal, but by my third one there were signs of a very fast growing fibroid tumor.  At 24 weeks pregnant, my tumor had grown to 15 pounds and my little miracle son, Charlie, was prematurely born weighing in at barely 2 pounds. 

After Charlie’s birth, I started to hemorrhage and ended up with an emergency hysterectomy to remove the tumor.  Unfortunately, things only got worst.  I developed a terrible infection and because of this they would not let me see Charlie who was in the neonatal intensive care unit (NICU).   The news that came next was even more upsetting. 

The doctors told my husband and me that Charlie would never be able to walk or talk and that he would be comatose- like.  The news was

"The first time I held charlie was two months after his birth"

devastating. All I could do was cry all day.  It was 2 months before I could see or hold my son.  To ease my pain I asked the nurses to take pictures of Charlie each day, and to my great appreciation, they did. These pictures remain priceless to me!

Eventually, I healed from my infection and when I was strong enough I decided to see what I could do to help my son. 

Charlie was diagnosed with BPD/ PVL caused by a grade 2-3 hemorrhage, which later caused spastic cerebral palsy/ visual issues/startle reflex/ apnea and left him medically fragile. Charlie does get sick a lot and so I quit my job to take on a new full-time responsibility, Charlie.

Charlie has been a fighter since day one
After a long stay in the NICU ward, Charlie came home. Being a new mom of a premature baby with so many serious health issues was overwhelming.  Just fighting the insurance companies was a nightmare. As was having the correct equipment, therapies, medications etc. Little by little, I learned to adapt, finding out that I can be resourceful and make
things work.

Charlie with his Grand Mama!

Through all of this I have been blessed with a wonderful mother whom Charlie calls Grand Mama.  She is my inspiration and frequently reminds me that, “Rome was not built in a day.”   This has become my motto, and yes, everyday we take baby steps.  With Charlie I never know how the next day will be.                                                

Today Charlie is a very happy, special little boy. Despite his spastic cerebral palsy he loves school, loves to sing and can walk with assistance, (especially if you are offering him a dill pickle to do so!).  He cannot use his right arm, his legs still scissor and he stiffens his body when he gets excited. But, he is the light of my life. His laugh is so contagious that I can't help but laugh when he laughs. His “life skills” teacher refers to him as a little con artist.  Charlie knows how to control his environment, he tells the other kids what to do and they do it! They even fight over Charlie to see who is going to help him.  One day when I took Charlie shopping there was a little girl who kept staring at him in his wheelchair. I told her that my son’s name was Charlie Jenkins. Charlie joined in and said, “Hello my name is Charlie.”  When the little girl asked me, "What is wrong with Charlie?" I told her that the difference between her and Charlie was that Charlie has wheels.   The little girl simply said, “Oh, okay.”  I almost fell over.   It was that easy!

Charlie has come along way, and still has a long road ahead of him.   He has grown out of his first walker so I can’t express my gratitude enough to Freedom Concepts and CNS Foundation for giving us the gift of mobility to my special miracle, Charlie. 

I am also grateful to CNS for pursuing research, particularly stem cell research.  There is a critical need for therapies and cures for our children and the work of CNS Foundation is a sign of hope for all of us that a cure will be found someday.

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You too can be a winner!

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